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November 27, 2004 - ChmbrlDe I found out I had sarcoidosis when I had a open lung byopsy done about five years ago. The sarcoid affected my lungs which are badly scared and my lymph nodes. I suffer joint pain and feel really tired. I find it very hard to cope and I do have support from my husband. A couple of months before I had the diagnosis I was in hospital through my left foot going cold and off colour I was told I had deep vein thrombosis in my left leg and I under went a five hour operation to save my leg. Within two days my leg clotted again. I agreed to go through with it because it meant I would lose the leg. The operation took another five hours it was a sucess. I am now on warfarin for life because I have a vascular disease. I have been on steroids, about a year ago I was on them for about two years a year ago the lung involvement went into remission. I now am on simvastine for my cholesterol and will be on that for life and a anti-depressant for panic attacks and depression. I have recently been ill with my back and joints; I was told I have osteoarthritis. I was 29 when I was diagnosed and I am now 35. I need a lot of support from my family because I get very confused and stressed. I am now experiencing breathlessness and inflamation of my nose and throat and wonder if this is to do with sarcoidosis because I get very confused. I have pulmonary scaring from the sarcoid and the clotting me and my family are out of out minds with worry and I have been discharged from the hospital. My doctor is no help and just says that some symptoms are of sarcoid but how when my lung involvement went into remission. I just needed to tell someone what I have gone through. I have three children two of which are disabled one learning disabilities and the other as attention deficit hyperactive disorder. I wonder if this was the effect of my sarcoid. If there are any other people with a similar story please post.
January 08, 2004 - Lashawn Hi I've had this illness for over ten years. I know about what everbody on line is talking about. I do have some insight on this illness. I'm 35 years believe me when I say I understand and felt the fear of dying. I have a lot to say but right now I'm hurting but I'm trying to open up my own web site about this illness. I will be back tomomorrow. By the way I'm a black female.
January 06, 2004 - Maureen I've just developed erythema nodusum, and doctors suspect sarcoidosis. I already have late-stage hemochromatosis with resulting liver cirrhosis, diagnosed 18 months ago, when I was just past 40 years old. I have lots of autoimmune type symptoms (including hair loss, dry eye/mouth) that all started 3-4 years ago. I'm wondering if the iron overload of hemochromatosis could have caused an autoimmune disease like sarcoidosis.
January 04, 2004 - Meg (R.N. - sarcinfo.com) A researcher, Trevor Marshall, PhD, who has had sarcoidosis for 30 yrs, has developed a safe treatment protocol based on the bacterial etiology theory plus information he and his pharmacist wife have discovered about medications to quell inflammation. He has successfully put his Stage IV sarcoidosis into remission. It involves simple bloodwork to check the level of Vitamin D metabolites which are elevated with granulomatous inflammation. Mycobacteria trigger a run-away immune system response in people who are genetically susceptible which causes the granulatomous lesions of sarcoidosis. The cells in these lesions actually produce large quantities of 1,25 dihydroxyvitamin-D which our bodies are unable to regulate. It's this abnormal level of Hormone-D that causes many of the symptoms like fatigue, muscle pain/weakness, numbness, joint pain, dizziness, sleep disturbance, facial palsy and migraines. This inflammatory process can be blocked with a new class of mild antihypertensives called Angiotensin Receptor Blockers (ARBs) which alleviates many of the symptoms. Because the bacteria are hidden within the inflamed cells of the immune system and do not have cell walls, they require a specific antibiotic protocol to kill them. Avoiding sunlight/bright lights and intake of Vitamin D is also important because this causes the Hormone-D level to rise. I have been following this protocol and my symptoms have greatly improved. I am aware of many other people who are achieving similar results. I hope that you will visit www.sarcinfo.com, read the information, get quick answers to your questions, decide for yourself and then talk to your doctor. (The person posting this message works for Dr. Marshall and for sarcinfo.com)
December 30, 2003 - Patricia Black female, 58, diagnosed with Sarcoid back in '73. Had no symptons then. Was told by my doctor then that some problems have to do with muscle aches and night sweats. I have been told that I have arthritis and ache from shoulders to my feet most of the time unless I take an anti-inflammatory med. Now my arthritis tells me that I have "jelling" when I sit for a few minutes and have a hard time getting up. Had a lung biopsy done 10/03 and was told by the doctor that he had difficulty completing the biopsy of my right lung (that the tissue bent his needle). That's scary! I have an appt set to see my pulmonary doctor in Jan. I am also experiencing menopause and cannot tell whether I am having "hot flashes" or fever from the sarcoid. I just had an Anterior Lumbar Fusion due to herniated discs in my neck.I wonder if sarcoid was a factor and if it is the major cause of the stiffness and pain in my joints. Also I would like to know if sarcoid causes major hormonal imbalances. Additionally, I have problems remembering now and wonder whether sarcoid is affecting my brain. What test is available? God Bless
December 18, 2003 - Carolyne I am a 52 year old black female that was diagnosed with sarcardosis in 1981 at the age of 30. It started with a cold that went away but the cough lingered for 6 months before they found out what was wrong. I took steroids for 6 months. And now I take them about once a year. The disease is spreading to my eyes now. I thank God for giving me this long with the disease before it start to spread. God bless everyone with this disease.
December 12, 2003 - Dixie I was told that I have Sarcoid in Dec. 2003. I found a lump in my jaw area and with a CT scan they found 2 more on the other side and a cluster in my lung area. They did a biopsy on it and when they took it out it was the size of a golf ball and said to be sarcoidosis. I am so confused because like everyone else have not heard of this. I read all these letters and still feel confused and relieved and yet still in the dark. What is it? What is it caused from? How did you get it? What are the lumps? Why does medicine just keep it under control and not get rid of it? If anyone has answers to this please let me and many others know, I would like also to know is it going to turn into cancer if nothing is done? And will it get worse, how big do these lumps get if not treated. Is predizone the only medicine that will help? Please help me find out some answers. I am tired, no energy, can't sleep, My arms and fingers get so numb and tingly and the pain is awful, my lower back hurts so bad. Any answers please send them to me. Not knowing is painful. Thanks Dixie
December 09, 2003 - Rose I'm anxious to correspond with anyone who has Sarcoidosis. I was diagnosed Nov. 25, 2003. My only symptom is a terrible dry cough. I'm on inhalers, but they don't help the cough. I'm not being treated otherwise. I'd like to hear from Cynthia, July 8, 2002. Her condition sounds a lot like mine. Anyone willing to discuss this disease? Thanks, Rose
December 08, 2003 - Helen My boyfriend was diagnosed with sarcoidosis last March. He had to take some time off work initialy. In October he got another attack, and found it very difficult to breathe. He was in the hospital, and even though he had reduced the number of steroids he was taking, he then had to increase them again. Like some of the stories I have read on this site, his symptoms include chest pains, irritation of the eyes, and side effects from the steroids. I am just wondering if there are any alternative remedies to relieve the symptoms, or does diet and environmental factors trigger sarcoidosis? Any information would be helpful.
November 27, 2003 - Lenore I recently had a close friends family memeber pass away due to sarcoidosis in her lungs. She had this horrible disease for about 13 years. No one really knew just how sick she was. Families don't always communicate well together. When we are sick we sometimes feel it's better if we make believe everything is okay. Well let me tell you that it is not okay. If you know anyone with this, or think they might have it, please have them consult many doctors, and also make their family aware that this is not something to shrug off. You may be saving someone's life. I wish I had known more then, instead of now when it is too late for me to do anything about it.
November 24, 2003 - Dave I was first diagnosed with pulmonary sarcoidosis about 6 weeks ago I cannot walk up one flight of stairs (12 steps ) with out suffering acute breathlessness. I also have really bad headaches and occasional nose bleeds which can last for up to 30 minutes plus. I can't remember the last time I had a full night's sleep. Also I have these out of body experiences when I can't remember what I was doing or have done within the last ten minutes. I have stoped driving my car after dusk becausse my eyesight fails me and I fear for other peoples life sake. Can anybody help me?
November 23, 2003 - Ann I am a 45 year old woman who had bronchaitis and pneumonia three years in a row. I was told that I had asthma and put on Prednisone. I still could not breath any better and gained 50 lbs. in 18 mos! Being heavier made it even harder to breathe. I went a new pulmonologist who put me on Singulair and what a big difference within a couple of months. I was feeling much better. I had a very bad car accident in Aug. and a CT scan showed that I had a 2cm mass and enlarged lymphnodes. A biopsy of the lymphnodes proved Sarcoid. The surgeon did not want to touch the mass yet because it is spiculated (might be cancer) and he wants to see if it changes at all in the next 3 mos.
November 19, 2003 - Rose I have just recently been diagosed with Noncaseating Granulomatous Infection. I would like to hear from anyone out there who has or had this disease, and what treatment did you undergo. I would love to hear from you.
November 14, 2003 - P Fretwell I was diagnosed with sarcodosis when aged 23 years and this involved no treatment but bed rest.
November 11, 2003 - Ira Hi all, I just had surgery this past week and been diagnosed with Sarcoidosis. I went a year suffering with one doctor saying it was just asthma. I do have asthma also. I lost my job due to constantant choking and gagging for air in January. Other medical problems I have is Diabetes, Kidney Stones, and have had to have 2 major back surgeries. I have applied for disablilty and don't expect to really get it. What hurt is right before surgery I saw a lung specialist he was like let's find out what you have Sarcoid or cancer but this is not a disability he told me frankly. No one will hire me with all this going on, can't get insurance, 39 years old and people act like your only problem is your lazy and faking the disase. Luckly though I have the world's best wife who is very supportive but I feel like I am letting her down not being able to work. No only do I choke and gag all the time, but I feel fatigued all the time. I also have severe muscle jerks espically when I lay down and go to bed, so I never rest good. I'd very much like to talk with others that have this same disease.
November 09, 2003 - Maria I am a 39 year old African-American female who was diagnosed with sarcoidosis in December 2000. Prior to this diagnosis, I played co-ed soccer and basketball with a church league. When I first began experiencing severe fatigue and the feeling that my heart and lungs were about to explode in my chest upon excercise, I went to my doctor. I also suffered from intense itching on my hands. My doctor immediately concluded that I was simply a victim of stress and allergies. My condition became so bad that I could not walk the length of my bedroom without almost fainting. I went to another doctor who immediately determined that my symptoms were real and referred me to a pulmonologist. Unfortunately, all my pulmonologist has done is treat my disease (pulmominary sarcoidosis) with prednisone. After my most recent visit, he said, "I'll see you next year." I came off of the medication in August of 2002. Since coming off of the medication, I have loss 60+ pounds. My joints are painful, can barely make it up a flight of stairs, and just have an overall feeling of malaise. Is there something that I can take that will make me feel like living? I have 2 young boys and I can't even play with them like I want. I have tried noni juice, vitamin E, God's Herbal Tea -- they haven't helped me. I read that the drug that is used to treat malaria can help. Is there any data to support this contention? I just want all of you fellow sarcoid victims to know that I understand what you are going through. One of my biggest problems is that I can't talk to my husband about how I feel, because it frustrates him that he cannot find a cure for me. My "complaints" are usually met with "Tell me what I can do." I don't expect him to do anything -- I just want somebody to talk to who listens. God bless you all and thanks for listening. Maria
November 09, 2003 - Beth I started getting sick the Summer of "2002" and started losing weight really bad. I wasn't holding any of my food down. Everytime I tried to eat anything I would reguritate it, not intentionaly but it happened. I started not feeling well, then my husband rushed me to the hospital cause I wasn't able to breathe. The doctor at first told me that I had Cancer and to get to a specialist right away. After staying in the hospital for two weeks as doctors picked and probed my body for two weeks they told me that I had a rare Lung Disease called Sarcoidosis. Well needless to say I don't know how I contracted this disease but I have it along with Type2 Diabetes. I'm barely able to go to work cause I stay so sick. I have lost over 70lbs. since having this loving disease and the doctors say that isn't good for me. I'm still not eating like I used to eat and that isn't good for my Diabetes either. I'm on 5 different medicines for this Lung Disease. I still don't have a clue to how this disease came about or anything. I'm always at the doctors office taking X-Rays of my chest and that drains me to the point I have to come home and relax for the day. I'm at the doctors office at least twice a month or getting ny chest x-ray 3 or 4 times a month then the doctor tells me I'm not getting any better but yet in still I'm doing everything that is told of me to do. I'm really frustrated about this whole thing and don't know what to do about it. Sometimes wish I didn't have this. It's really hard explaining to people what Sarcodosis really is when all I know its a Lung Disease. I need more information on this disease for my sake. What can I do to make this a little better?
November 01, 2003 - Helen Hi all: Five years ago I had asthmatic bronchitis which lasted from Thanksgiving to after New Years. Fortunately for me my company switched insurance plans. I was annoyed at the time, but it was a blessing in disguise. Upon meeting my new doctor, he sent me for tests and I did not have asthmatic bronchitis, I had sarcoidosis. A broncoscopy was performed to rule out Hodgkins disease, but I had nodules on my lungs. The nodules showed up three times in the past 5 years, but I have low back pain, (I also had back surgery 10 years ago) and very bad leg pain, hip pain, knee pain and pains in my shoulders and hands. Every doctor I have been to has diagnosed me with something else. My PCP told me to go to a rheumatologist - - he said I had fibromyalgia. The pulmonologist said I had sarcoidosis and asthma, the orthopedist said I had osteo-arthritis, I have recently tested positive for Epstein Barr, as well. To top everything off I also have Graves disease. I had hypothyroidism, I take synthroid, but they also tried to kill my thryroid with a radioactive pill. It is still functioning, however, and I don't want to go that route again. I'm afraid. I went to pain management recently. He gave me Lidoderm patches. So far I tried three at one time and they do not work at all. I take ultracet during the day, I live on vioxx (an anti-inflammatory) I take Bextra at night, and the patches and I can function, but I'm never pain free. The weather does affect me a lot. I always have headaches. Needless to say the doctor says I'm depressed (Duh, I wonder why). This has been going on for years now and the one stupid thing I did do was to feel sorry for myself and get so drunk one night that I fell and hit my head on my dresser. What a lump I had. I do not drink at all. I guess when I finally gave in to the stuff, I did know my limit. My husband came home and I was on the floor. What a scare. Don't anyone be so studpid as that. I was so fed up with my boss complaining about my attendance at work, and the fact that my performance was not what it should be, that I guess I was depressed. I start seeing a psychologist next week. I'm hoping for better days.
I was diagnosed with sarchoid 6 yrs. ago. In the last 6 years I have had 4 flare-ups where my nodules had to be treated with prednosine. Recently the pulmonologist told me I could reduce my meds, he thought I was in remission. Two weeks have gone by and my chest is tight and I am asthmatic again, I have no energy. Back I go for a re-exam. I also have pain, bad pains in the hips and bad low back pain, and knee pain. When I'm out of vioxx, I'm out of work. Can't live without it. Frequent urination during the night leaves me tired in the morning. My rheumotolotist says I have fibromyalgia, my PCP says its all in my head and I should go to a psychologist and get more exercise b/c I gained weight from the prenisone. I did go to the gym and I did low impact exercises and worked with a trainer at the gym. After one week, I was almost crippled and missed work for a whole week, I could not move. Blood tests now reveal that I have Epstein Barr. Addtionally I have only a partial thyroid. I had part of it removed due to a nodule that had to be removed. I'm on synthroid but the dosage is not stable yet. I'm waiting for better days. I'm a new grandma at age 56 and I feel like I'm 85. I am going to keep the faith even though years have gone by b/c sooner or later it will either go away or overtake me. One or the other. We will just have to wait and see. I want so much to enjoy my grandson, but my daughter in law can see my pain in my face. Oh well, Good luck to all.
November 01, 2003 - Donna I am a 42 yr. old recovering alcoholic woman. I stopped drinking 3 yrs. ago and noticed the bumps on my shins, they were ugly but small. Now they are about 2" long and are on my arms also. I went for a biopsy and the results were sarcoids. I go Monday to have my lungs x-rayed and ace level checked. I have appreciated reading everyone's comments. I too have aches, shortness of breath and fatigue. I will keep everyone posted on my progress. I am interested in knowing if anything can trigger this cause to my knowledge I am the first in my family. Thanks and god bless.
October 20, 2003 - Tammy My mother was recently diagnosed with sarcoidosis, She is a 46 year old African-American. She has been struggling with this for over a year. She went to the doctor for swelling in the legs and feet and was put on fluid pills to stop the swelling. She is now taking Prednisone and is not sure if it is the right thing to take. Does anyone have any suggestions on treatments? It would be greatly appreciated. she would also like someone to talk with that has been diagnosed with sarcoidosis because before we found this web-site she felt very alone.
October 20, 2003 - Loretha I need your help. My co-worker has been diagnosed with Sarcoidosis which is affecting her brain. Please give me an address to where I may find more information concering this particular illness. The doctors have yet to tell her, exactly, what is going on. Any information, will be appreciated. Thanking you in advance for your cooperation.
October 20, 2003 - Marva Ann I am a 29yr old black woman, in the state of Texas. I am being checked out for sarcoid. I have strange symptoms like: poor blood circulation, fatigue, pnuemonia, ulcers on ankles, heart murmur since birth, and other things that are hard to explain. If there is someone out there that can help shed some light on what is going on with me. Please let me know.
October 15, 2003 - Antoinetta I have been to the doctor's office last year and he informed me that my left lung appears to be scared as if I worked in a factory of chemicals. I explained to him that I have never worked around chemicals and he wants to do a biopsy. I am very afraid to have the biopsy and I'm afraid to not have it. I really need someone to talk to.
October 10, 2003 - Debbie I am 42 years young and I was diagnosed with sarcoid in 1994. I always just had it in my joints and lungs BUT now I am suffering with lungs, joints, colon, and my spinal cord and Nervous System. I have never been more afraid than I am now. I could handle the pain but to have constant buzzing, pain and numbness is so frightening. My husband is great but he will never really know the extent of how much I suffer. I am going to stay positive that my doctor will find out what is triggering my immune system to go nuts like this. I am a strong person but this really sucks!
September 28, 2003 - Cori I was just diagnosed with sarcoid and my lungs hurt the worst but so far they see nothing in them. Can someone tell me If I can get disablitity insurance for this disease as I have been very sick for the past 4 years and finally getting diagnosis.
September 26, 2003 - Rena Hi, I had sarcoidosis in 1995 & 1996. I had lung involement. I was very sick for these 2 years. I had a severe cough that lasted 24 hours a day. I would get to the point of vomiting from the coughing. I was on large doses of steroids, 100 mg a day. This was 10 pills a day. I had the balloon effect from this that was very disappointing. When I looked in the mirror I would cry because of the weight this put on me and the balloon effect. I lived in a 2 story house and we had to move because I could not go up and down the stairs. I was very short of breath. I could not work at this time. I finally woke up one morning and it was gone. It left as fast as it came. I am now having the symptons again. I have the severe cough back and shortness of breath. I cannot keep food down very well. Does anyone out there have the vomitting problem? I have been to a pulmonary specialist and I went to the hospital the first of this week and had tests. I will be seeing the doctor again Monday for the results. I feel sometimes so alone with this problem because it takes everything out of you. My husband was not married to me when I had the first episode of this and he is not very understanding of my problem. This does not help the stress factor. I have been off work for 3 weeks now with this and I believe it will be a lot longer. The problem is I just started this new job so I know I am going to lose it. I am losing weight this time with this but as soon as I get on steroids that will come to a stop. Has anyone out there experienced the weight gain with the steroids? I am hoping someone will have some answers for me. The doctor said to be prepared for surgery when I see him again Monday. Here's hoping that they will do more research on this disease and find a cure.
September 21, 2003 - Sandra I am located in North Carolina, and my friend has sarcoidosis and she is in search of a specialist for this disease. I would appreciate if someone in North Carolina could direct us to a physician.
September 16, 2003 - Shontae I lately found out that I have swollen lymphnodes in my chest and the doctors won't tell me much about what it is and where it came from so my only question today is that I would very much like it if you could send me some type of information on this.
September 08, 2003 - Shonnie Hi. I was diagnosed about 4 months ago with sarcoidosis. My first symptoms were like a lot of yours. Shortness of breath, cough, severe pains in my chest (thought it was pluerisy). I am a hairstylist, and was wondering if any of you or any you know of might have this disease because of this occupation? Also, I believe there could be black mold in the workplace as I can see it around the a/c vents and on the floor by my station (where there was previously a leak). The building is very old. Have any of you been told your sarcoid is related to Black Mold? I'm so worried about this getting worse and I'm in a constant delima as to whether to change jobs or what. I have 2 children and a wonderful husband that I need to be here for. Any comments would be greatly appreciated.
August 26, 2003 - Josh I have been reading a lot about Sarcoidosis, at first I was happy to learn that I have Sarcoidosis cause the other possibility was cancer. I don't know if I should say that I am still happy now, or if I should have ever been happy to begin with. I am lucky I have a very caring and knowledgeable doctor, but as we all know there isn't big research into this, because there is no big investment into this, and apparently there is no intentions. It’s like someone on the other side is saying, well let those with Sarcoidosis spend on the medicine industry (doctors, insurance, pharmaceutical) so we can do better research on this little and more on some other disease. Only those who has it can understand me, I wish everyone else would understand me as well, so we can have a strong society one day that has some say in investing more in Sarcoidosis research. Even though I don’t believe this message would make a difference, but I strongly believe that it will awaken some of us.
August 21, 2003 - Rachel I was diagnosed with Sarcoid in 2001. I rushed myself to the hospital with severe chest pain. I thought I was having a heart attack. After a chest x-ray, I was diagnosed with possible acute pnemonia. Finally I was told that I probably had sarcoid because my ACE levels were so high. To make a long story short, a month ago, I was placed on prednisone. So far, I have gained 8 lbs in one month, and my face looks bloated. My doctor placed me on steroids, because I was starting to have problems breathing, and my PFT test came back awful. A bone density test was done, and guess what? I have osteoporosis. I don't think this is from the steroids because I just started this treatment, but now I am on steroids could my osteo get worst? So far, this disease has only attacked my lungs. Hopefully it will go into remision soon. Please pray for me.
August 16, 2003 - Felipa I have two lumps in each side of my neck. Six doctors have checked me and one of them operated on one lump and said it is tissue. I would like to know more about.
August 13, 2003 - Brian I was diagnosed with sarcoidosis of the lungs 12 years ago but couldn't find a doctor who would treat it. Now I can't breathe and tests show it is 4 times worse than it was when first diagnosed. I want to claim it as a disability. I can't work because the boss says I'm too slow. I am 51 years old and can't get enough air to even walk normally. When I was delivering beer to downstairs bar rooms and had to carry 200 - 300 cases I thought I was going to die.
August 11, 2003 - JaNelle I'm a 26 year African American Female. I was diagnosed with Sarcoidosis in April 2003 and as of yet my Doctor says I don't need medication. My Dr has basically told me I'm as healthy as an ox. After reading some of your posts I'm scared to death. I was a smoker and now I'm trying to quit even though my Doctor has said from what they know smoking is unrelated; however the more I read about it, I see it says I shouldn't smoke! I've had two X-rays. My Doctor says in both my lymph nodes were enlarged. I haven't had any other side effects besides a little itching on my skin and uveitis in my eyes, but now I'm starting to lose weight. I went from 155 to 142 lbs in about 2 months or so. I needed to lose weight but NOT like this. Does anyone know of any herbal supplements that could help? If I can help myself from getting any worse before I HAVE to go on steroids it would be big help.
August 06, 2003 - Kathleen My name is Katie. I am 25 year old mother of one son living in Washington state. This last few weeks I was diagnosed with sarcoidosis. My Doctor thought I had cancer or sarcoidosis. After painful lung biopsies we found out it was sarcodosis. I have been living in pain for years. I have always been severly sick. I have cronic sinus infections that infected my brain, numerous overy surgeries, and chronic lung infections. I am sick every morning no matter what I do. My doctor tells me to take percocet to relieve the pain in my chest, it has been about 4 weeks of this. The pain medication doesn't work. My son is only three years old and this is so difficult for him. We used to run and play but some days I am too sick. My best friend of 15 years has offered me no support and I feel so alone and trapped. My boyfriend of 8 years (also my son's father) doesn't undersand. He drinks a lot which makes me feel even worse. I also have no medical insuance, no company wants to insure me or my son. I don't even think my doctor knows about the disease. So I keep looking up all the information on the internet. Thank you for reading my story.
August 05, 2003 - Mary Alice What are the symptoms of Sarcoidosis? I have bumps that are hard and come up on me when I get stressed. I also have mast cell activation?
July 30, 2003 - Michael In April of 2001 I noticed that I could not see very well out of my left eye and was later diagnosed with inflamation of the retinal area. After several months of treatment it turned into full blown Glaucoma and a Cataract for which I had to have surgery. I still cannot see very well if at all most times. In late January 2003, I had a sudden breathing attack in my left chest, from which I almost collapsed. I could barely breathe, and could only take short breaths due to the pain I was experiencing. After some x-rays to determine that there was something abnormal, and a biopsy to confirm, I have been diagnosed with pulmonary Sarcoidosis. I'm currently taking Prednisone, in which I started out at 40 mg per day and now I'm down to 10 mg. Eventually my doctor wants me off of the medicine, but the last time we tried (1 month ago) my symptoms started back. I still have pain in my left chest on a daily basis. My biggest concern is my eyes in which I wonder if my original problem there was caused by the Sarcoid. I have been lucky so far and have not experienced the side effects of the Prednisone. I may be moving to the Dayton, Ohio area in the near future from Denver, and would like to know if anyone is aware of a specialist in that area. Thanks. God Bless.
July 25, 2003 - Sylvia Hi, I just found out today that my 28 year old son has sarcoid (liver). My 60 year old sister was diagnoised with sarcoid (lungs & liver) 2 years ago. I have been reading as much as I can today on sarcoid but can find very little on liver involvement. Does anyone know what I should expect with liver problems? Also some of the things I read say sarcoid is genetic; others say it is not. Where do I go from here? Should I have my daughter 14 year old checked? Should I be checked? Help and Thank you
July 23, 2003 - Irene One year ago, I was scheduled for colonoscopy. I had been having severe stomach pain, tired and just didn't feel well. I am 61 years old, so I decided all this plus being short of breath was the culprit. However, to make a long story short, a catscan picked up something in my right lung and the lymphnodes were enlarged which meant I had Sarcoidosis or lymph node cancer. My family has a history or cancer, so I was pretty upset. The diagnosis -- sarcoid. The doctor put me on high doses of prednisone, water pills, etc. I gained weight until I thought my arms and legs would explode. Had the moon face, slits for eyes and couldn't hardly walk, didn't have any energy. My best friend found a website with Dr. Robert Baughman's name on it as a sarcoid specialist. He is not an expert but has had a clinic for sarcoid for the last twenty years. I went to him and because of all the joint pain I was having and the severe cough, he put me on Plaquenil, 200 mg twice a day, prescribed a metered spray that goes directly to my lungs, it is called advair. He also gave me an rx for Rhinocort to use in my nose every day to keep the sinus from draining and causing further coughing. I have taken this faithfully, tried to avoid anything that sets off the coughing episodes and I am doing better, The last catscan I had about 4 weeks ago shows that the saroid in my lung has shrunk some and so have the lymphnodes. I hope this helps someone else. I know what it feels like to go through what all of you are going through now.
July 15, 2003 - Maureen I've just been diagnosed with sarcoid 5/2003 but I'm still in the testing stage. I'm constantly tired, and suffer from shortness of breath. A liver biopsy revealed the sarcoidosis. Now my pulmonary specialist has ordered a CT Scan of my chest, and a PFT (Pulmonary Function Test). I read the comments of another sarcoid patient who swore by the Tahitian Noni juice. I bought it and started feeling better immediately. Maybe somebody out there might like to try it.
July 15, 2003 - Robin After an ER visit and a month of chest pains, an episode with a terrible rash, and what I thought was pink eye, I've been told it's sarcoidosis. I've read about this disease and about the prednisone, good and bad. My question is, has anyone had noduals around their heart and what can be done about it?
July 11, 2003 - Darlene I have been diagnosed with Sarcoidosis in my lungs, liver, heart & eyes. Right now the problem I am having is severe cramping in my toes, feet and legs. I am also sweating excessively. My hair is always wringing wet. Has anyone else ever experienced this? And what did you do to control it?
July 09, 2003 - Phaedra I believe that my Mother knew she had Sarcoidosis long before she let her family know. When we found out it was 1992 after she had scraped the back of her leg. In 1997 the doctors told us she would die. She had been in every nursing home and hospital in Baltimore, Md. April 7,1998 she passed away. To this day I still don't know how this happened. She was in so much pain and unable to do anything for herself. There are signs. Please watch family members carefully for different behavior patterns and the denial of being sick and needing help. My mother died when I was 22 years old now five years later I still have to explain to my Dad after 39 years of marriage why this happened and how it happened. I don't know a lot about the illness, I just know it came and struck fast in my family. My Mother's will power was gone and the strength to live on was no more. For eveyone that has sarcoidosis please take care of yourself and don't be afraid to get help.
June 14, 2003 - Paula I am 42 years old and was diagnosed with Sarcoidosis in January of this year after extensive testing. I was put on prednesone 40mg per day and have been taking it for the last five months. My breathing problems got better, but everything else went haywire. I now have Gastric Reflux, Depression, Terrible Sweating every time I go somewhere or exert myself walking. I also have pain and swelling in my feet and calves of my legs, itchy rashy skin, pain in my muscles and sometimes my bones ache. I thought I was losing my mind until I read some of the posts from other people here. Please Please can someone tell me if they are experiencing any of these symptoms and if there is anything I can do to make things better. My pulmonologist seems to only want to treat the lungs and that is it. I also broke my leg in two places the year before they found the Sarcoidosis when I was just walking, no fall, just turned and felt it snap and had to be taken to the ER where after Xrays they determined it was broken in two places. Has anyone had problems with broken bones? Thanks for your help or comments.
June 13, 2003 - Calvin I was diagnosed with sarcadosis 28/02/02 and put on prenisolone. This was increased in August 2002 to 50ml. This was reduced gradually to my present level of 10ml until a review in September 2003. I have gained nearly 56lbs but am now slowly losing it. At the age of 38 it is very hard on me. Hope some of you will be in touch so I can start to set up a support group because there seems to be very little info about or the fact that complimentary medicines may be of help. I am not only a practitioner of REIKI but have had some relief from therapies of reflexology and Indian head massage which has reduced the joint pains I have been suffering with. Has anyone also been put on FOSOMAX the anti-oestoporosis drug against the side effects of azothioprine which I am also on at 200mg a day?
June 08, 2003 - Roseann I read Abaro's letter about sarcoid. I have been diagnosed with sarcoid . It is in my lungs, liver, spleen and just this week I developed a nodgle in my left eye. I have severe mid-back and lower back pain. I had an MRI of my thoraic spine which was negative. Just would like to know if anyone else is experiencing back pain especially in the morning. It takes me at least 10 minutes to get out of bed. Some days my back feels numb. I also would like to know if there are other test to prove if there is sarcoid in the back. My lung specialist just monitors me every 3 or 4 months. I am not taking any medications. I will not take Predizone there are too many side effects. The Doctor feels I am not severe enough to take medication. I would like to thank everyone who has written about their problem because I don't feel so alone.
June 05, 2003 - Slacka I have been intriqued by this reading having suffered from COPD for many years. My occupation was that of a toolmaker. I fabricated and machined many of the tools used today in modern industy. I worked with many exotic metals and chemicals, a great many are outlawed today as I'm in my fifties and many OSHA laws have changed since I first entered the work force. I have interstital lung disease. My lungs became so inflamed from my exposure to metal dust and chemicals they scared and refused to fully function. I have tried many remedies and therapies and the best one is to live every day to it's fullest. Just remember we can't take life too seriously because we won't get out alive anyhow. Buy the way, when I tried meletonin it was great I was walking three miles a day for two months until my lungs collapsed. Be extemely careful with herbal supplements they might work initially but heed caution and check with a number of physicians. When you can't breath don't accept one person's opinion, get several.
June 04, 2003 - Robin My twin brother died last November (2002) of a heart attack complicated by sarcoidosis. The sarcoidosis wasn't discovered until the autopsy. He'd have recurrent coughs and colds and no one suspected the disease was a contributing factor. He took Siberian Ginseng regularly and, I believe, this masked the seriousness of his condition. He was a non-smoking police officer, martial arts expert, surfer and otherwise in excellent health. His death came as a total shock. Even though I have worked off and on in the medical field, I had no idea what sarcoidosis was until I saw the Medical Examiner's report. I wished my brother had learned about this a long time ago, he might be here today were that the case.
June 03, 2003 - Jim Hi all, I'm 36 from Northern Ireland. What a great site! I was diagnosed with pulminary sarcoid just over 4 years ago and what a strange world it's been since then. I, like a lot of you, went thru the "it could be cancer, lets cut a bit off and test it" syndrome. Thankfully not the big C but not to make to light of it I have had a very bad time like you all. The worst pain for me is what I can only describe as my bones being pushed apart from the inside in my hands. I found that putting them into very hot water eased the pain. My chest pains and shortness of breath have eased a lot thankfully and my weight has stabilized after losing 5 stone at the start. hehe .. skinny me !! The wife wants a blood transfusion from me to get some skinny cells. Thankfully I am able to continue in full time work pain killers are a great asset. I don't take any steroidal based treatment, just pain killers all the way. Thanks for reading and I hope and pray that more research is forth-coming on sarcoidosis.
June 02, 2003 - Irene Two years ago, at the age of 58, I was diagnosed with Sarcoidosis. Fortunately, they found it early on. I too was put on prednisone. I am normally a small person, but my weight ballooned until I felt like I would explode. I had severe joint pain and swelling, tired and miserable. Thanks to a friend of mine, she gave me the name of a doctor, a specialist, in Cincinnati who has been doctoring people with sarcoid for the last 20 years. He checked my cat scans and x-rays--my lymph nodes were enlarged too, and that can get worse and press against the organs causing bigger problems, even death. The doctor prescribed for me an Advair inhaler which goes directly to your lungs and also took me off the prednisone and prescribed Plaquenil. My lung doctor then prescribed Rhineocort and Zyrtec. My liver, eyes have to be checked also but last week, I had another CAT scan and the lymph nodes were smaller and the sarcoid in my lung was smaller. I thank God for steering me in the right direction. I am now having pain in my hip and leg and back along with the other problems you already know about. But things are better than they were, so don't give up. Things can get better.
May 30, 2003 - Heather I was diagnosed with sarcoid in Oct 1998. My epiglottis got so enlarged I had to have surgery. I suffered for over a year. Lots of steroids. A lot of allergy testing, lots of allergy pills, breathing and swallowing problems. I am almost always tired. Most of the time I feel bruised all over. I have pain in my knees, fingers, elbows, bottom of feet. My ribs feel like they swell. My abdomen looks red and puffy sometimes along with pain like I have been kicked in that area. Same feeling that I get when my knees are red and puffy. For about 8 months my lips and jaws swelled and were sore. That is gone right now. I would love for someone to write me. This disease is strange and scary because you don't know what may come next. I do work full time and still live a pretty normal life. I don't know anyone else that has this. It has not affected my heart and lungs. I have tests each year.
May 28, 2003 - Teresa I was diagnosed with sarcoidosis 2 years ago after sinus surgery. I had trouble breathing and thought this was the key. After surgery and the diagnosis I have a constant ringing in my ears and chronic sinusitus that is miserable. My nasal passages are never clear and there is always a thick mucus that runs dowm my throat during the day and accumulates in my nasal cavity at night making it difficult to breathe. I am constantly up at night clearing my nasal passages with a god awful noise. Afrin is the only thing that works at night to help me breathe, but I know I can't use this long-term. Steroids have too many side affects, nasal rinses give me ear infections, flonase does not help much. Sinus infections are constant and the antibiotics give me a yeast infection. Am I stuck with this condition or is there help!
May 19, 2003 - Faye To Colin and Mindy: have you been checked for mycotoxins? It comes from mold. I have all the symptoms that Colin has. I have a doctor who specializes in biotoxins. I was diagonised in April, 2002.
May 14, 2003 - Carol I have had sarcoidosis for about 3 years. I have been on predisone for that length of time. My skin seemed to grow thinner all the time and I developed stomach pains. I have been real sick for the last two years in addition to the sarcoidosis, I have had a pinched nerve in my back. I thought possibly my non-hodgins lymphoma had returned and another tumor had grown back on my spine. After an MRI, the doctor said I was free of tumors. Thank the Lord. But I continued to be sick every day. About four months ago, I ran out of the prednisone and my prescription neede to be renewed. By the time the drug store reached my doctor, and he returned their call, three days had gone by. I realized, I felt so much better without the prednisone. My stomach problems were gone. But now, a nodule like the ones in my lungs, grew on my right arm and one on my hip. Both were red with fever and were growing. The one on my hip went from the size of a dime to the size of a quarter. I was starting to get very worried. I did not want to have to take the prednisone again. My breathing was getting worse too, I think the nodules in my lungs were growing too. I would get out of breath walking from the bathroom to the kitchen. My teenage son and I were praying for a miracle, for healing. I would wake up in the middle of the night and he would be standing next to my bed with his hand on my head, praying for me. His room is across the hall from mine and he said he could hear me all the way over in his room, trying to breathe while I sleep. God heard our prayers. It is so terrible to be sick, no one should have to be. The medicine the doctors give us, have warnings on it that tell us of all the dangers it can do to us, but in our desperation, we take it anyway.
May 12, 2003 - La Verne I am a 59 year old female and I was diagnosed with Sarcoidosis when I was 35 years old. All types of meds were prescribed to me with a numerous side affects. It was diagnosed originally in my lung and now it has gravitated to my face. I have decided to take herbs and various nutrients and I am happy with the results of Coral Calcium. The nodules on my face are not as inflamed as before.
May 06, 2003 - Denise My mother recently told me that she has this disease. Right now I am online trying to research all there is to know about it. Naturally to keep her children from worrying she doesn't reveal much. Can anyone tell me what is the survial rate for people suffering from Sarcoidosis? Does being diganosised with this mean your gonna die a painful death? Or can you live a normal life with it? Anything that you all who are living with it or even know someone who is. I just want to know a percentage or anything that can give me knowledge about this disease.
May 06, 2003 - T.J. My husband has been suffering from a severe cough for about 4 years. The doctor said it was probably asthma and gave him albuterol inhaler. He uses the inhaler non-stop. About a month ago his feet, legs and arms were so swollen he could not bend his knees to walk down the steps. I took him to the ER where they ran a bunch of tests and finally after 4 years took a chest x-ray the ER doc said nothing was wrong and gave him a shot of a steroid and sent us home to follow up with our doctor at a later date. Finally they have scheduled a Chest catscan and our doctor says he doesn't think it is sarcoid but he is just doing it to see. Why else would a perfectly healthy 33 year old be so miserable all of the time? The steroid wore off and puff up like a toad he did again and is back to feeling miserable. I am really scared because everthing that I have read they have no answers and if it has affected his lungs all of these years with no treatment what irreversable damage has been done. I have 2 nephews with cystic firbrosis and they sound very similar but my husband is ten times worse than they have been on their worst day. We are waiting on the scan and the possibility of other tests to determine this diagnosis. Any input would be helpful.
April 29, 2003 - Becky Hello Fellow Sarcoid Suffer's: I was wondering if anyone has tried homopathic medicine or herbs for their scarcoid? I have been on Predisone for many years and would like to get off of it. I tried once and had a flare up. I also take Plauqanell, Singular, etc. Please let me know if you have any suggestions. Thank you.
April 28, 2003 - Cathy In 1994 while in North Carolina I started developing a rash on my left arm. I thought I got this rash because my husband was in the military and just got back from Saudia Arabia. Well, for 9 years the rash would come and go sometimes twice and year and then 3 times and so on. This rash would occur with a cough like a cold with no mucus and then it would go away. That was when my sarcoid would go into remission. In 2000 I was getting so tired and gaining weight like crazy and went to the doctors and had a test and my thyroid was 37 which meant that I have hypothyroid. I thought I was going crazy; I didn't know how to spell, I forgot where I was going all the time. It made my job as a teacher very hard. I also had a boss who didn't believe that I had a medical problem. When school started in September 2001 I was fine taking my med 0.175 mg or 0.200 mg synthroid. I started having a fever of about 101 daily. This concerned me because the rash was back and the cough from hell. My tummy was tight because of the coughing. This continued with weekly visits to my primary doctor who didn't seem concerned about the fever or the breathing. Then it started around October the weight loss. I was losing weight like a person on drugs. I decided that I had AIDS because of the coughing, skin rashes on my shins and sores on my left arm. I was reporting all my symptoms to my doctor and he had no knowledge of this sarcoid. I was told that my thyroid meds were working that is why I was losing weight. Then I started coughing, joint pains, couldn't move, I had a fever of about 102 daily and I continued to come to work because the doctor didn't know what was wrong and what could I tell my boss. I tired and the doctor doesn't know what is wrong. By April 2002 I had lost 130 pounds. The doctor still wasn't worried he said it was my thyroid meds. I said I'm sick and dying I need help. He told me to find a lung specialist. I found doctor Murthy on April 16th; I told her my problems and she told me what I had. I started on 40 mg of prednsone. By May second I was on the mend. I still continued to work and to teach summer school. I started gaining weight slowly at first because of the Thyroid meds. By Dec 2002 I went from 168 lbs to 247 lbs. Now today I am trying to get off the prednsone. I am still having all my symptoms and now I am developing rashes that look like Lupus. This Sarcoid is a strange thing and if you can tell me what I can use to feel better let me know. I am not on oxygen yet, and I hope that I won't have to be. I love to teach but each day it gets harder. I am not giving up. I live each day for that day and hope for a cure. I want you to know that gaining weight is not sexy at all but it's better than not being here at all. Like I tell my doctor, I can be fat that's cool even though it makes the breathing hard. I am still here to see my partents and teach. I am having some trouble with my liver and heart but I am keeping it moving. My advice to you is to keep your head up and keep it positive. Everyday is a good day until you miss one.
April 24, 2003 - Nick I was recently taken to the hospital from work in an ambulance because I was having severe chest pain and trouble breathing. I was given chest x-rays and a CT scan. Both revealed that I had enlarged lymph nodes in my chest. I was seen by an oncologist and he thought that it might be lymphoma. I was scheduled for a biopsy which showed that I didn't have cancer but I had Sarcoidosis. I found that it is responsible for all of the skin, eye, and breathing problems that I have been experiencing over the last 7 months. The Doctor is saying that he may start treating it with Predisone. I'm curious about the side effects can anyone tell me about their experiences.
April 23, 2003 - Tracy Hello to anyone and everyone who is reading this! My name is Tracy and I live in Missouri. I'm 30 years old and was diagnosed with Sarcoidosis 6 years ago. I'm approximately 5'8", and used to weigh 135lbs at the most. Today I'm at 112lbs and seem to keep loosing weight. I'm posting my message today just so I can get what I need off my chest. I have had a struggle with sarcoidosis all 6 years and I don't know which way to turn. I feel as though my doctors really can't help me and my body is continuing to get worse. At first I was withdrawn with others because of my illness. I had shortness of breath, coughing up mucus, dizziness, headaches, and the most horrific pain in my joints. There were days that I just could not function at all. Over time I have been on and off of steriods and have been taking anti-depressants for years. I end up having to take more because my well-being is in jeopardy. Lord knows I'm trying very hard to deal with this but I feel as though it keeps getting the best of me. I'm working 56 - 60 hours a week and trying to go to college at MWSC off and on part-time. My grades have taken a toll and my life was at a standstill. I'm worn out and yet I have to do these things. I have to work to keep the insurance or I won't be able to afford the doctors (which I really can't afford 3 doctors as it is now) But I'm still trying. I have skin lesions that are persistant and off and on eye problems. My joints continue to hurt now; my arms are so bad that I cannot fully extend them. Due to the excessive use of steriods I have had one hip surgery and due to have another one within 3 weeks. It seems that I need the steriods to live but yet they are doing so much bad harm to my body by taking them. I'm damned if I do damned if I dont. I'm tired and frustrated and don't really know what to do. I have started counseling to help with my mental state, but my physical state is still deteriorating. I know deep in my heart that this illness will continue to ruin my life and I have little hope. I will not give up, I refuse to! I'm here today just to let anyone who reads this know that I feel your pain, truly I do, and I wish the lord will take it all away. Somehow we have people out there going through what we are going through each day and you have every right to get angry and want to yell. Do just that yell, because none of us asked to be this way and I'm damn well for sure none of us wishes to stay this way. Stay strong and God will be there for us no matter what, you are ALL in my prayers. Sincerely Tracy feel free to post anytime if you need someone to talk to cause I need the same company as well. God Bless
April 19, 2003 - Kate I'm a pharmacist with sarcoidosis. When I was diagnosed, I researched like crazy to find a natural, non-toxic therapy that works. I am treating with a naturopathic physician. As with all autoimmune problems, completely eliminating gluten-containing foods from the diet permanently is working great! This means no pasta, bread, cereals, sauces, snacks, etc, that contain wheat, barley, rye, or oats. I've added melatonin at bedtime, and my physician added testosterone transdermal cream. The erythema nodosae which I had all over are nearly all gone. The asthma from the sarcoids on my lungs has completely stopped. The joint pain has decreased, and energy levels are great! There is hope without prednisone!
April 17, 2003 - Rosemary Hello, I posted a couple of comments way back in October 1996, shortly after I was diagnosed as having Sarcoidosis. I think my comments show that I was doing well after my initial first few months of treatment. I didn't realise how long it would go on for though. Unfortunately Sarcoidosis I believe, has troubled me healthwise constantly since. I have been through years of chest and stomach problems and various other complaints. I have been told by the doctors, that they believe none of these problems are sarcoid related, however, they do not have an explanation for my problems and I am no longer on any medication. Lately my veins keep rising up now and again and feel uncomfortable. Strange, what's that all about? I am unable to put on weight. I now weigh 6st.10. I am going back to see my original 'Sarcoid' doctor soon and will ask for some blood tests to be done, as something isn't quite right. I just thought I would send this update. If anyone has had anything similar, please could you let me know on.
April 15, 2003 - B. David My husband was just diagnosed with sarcoidosis. At first they thought that it was cancer. After a biopsy, the surgeon came out to tell me that it was either Hodgkin's or sarcoidosis and that it would be better if it was Hodgkin's. His lymph nodes are so enlarged that they are cutting off his esophagus. At times, he is unable to even swallow liquid. His spleen is also enlarged and other than that we are not sure where else, if any, that it is. We go tomorrow for his first appointment with the specialist to find out how bad it is and if he needs to be on steroids. We had never heard of sarcoidosis until now and after looking for information on the subject are coming up empty-handed. Mostly, all we can find relates to lung sarcoidosis. Anyone know anything about it affecting the esophagus? Any thoughts as to anything that might help?
April 12, 2003 - Janice I want to know more about sarcodoisis. My husband was diagnosed 27 years ago, discharged from the army, and never treated since. The doctors in our area don't really have anything to say about it. I think maybe they don't know much to say. My husband is now having some serious heart disease at age 44. I want to know if the heart disease is common in young sarcodoisis patients. Does anybody know if the two are related?
April 10, 2003 - Mindy My name is Mindy Henson and I live in Mississippi but was originally diagnosed when living in Louisiana in a house that was found to be filled with mold and fungus. I was diagnosed with sarcoidosis in my sinuses almost 8 years ago. I have a lot of joint pain and constant sinus infections. The worst symptom has been chronic hoarseness. I am a teacher and used to sing . This has been the most devastating part of the disease. Has anyone else had this problem and possibly found a medication that helped relieve the hoarseness? Prednisone has been the only medication that helped but after being on it for a few years my doctor wanted me to get off and try methotrexate. It hasn't been helpful at all. I would appreciate any input. Thanks
April 08, 2003 - Colin For those of you with SEVERE MUSCULOSKELETAL SYMPTOMS due to sarcoidosis, READ ON. I discovered this site the other day whilst researching sarcoidosis, and to say I am flabbergasted is an understatement. I was aware that it was not uncommon, but I never realised that my suffering was being replicated in so many other tragic cases. I do not use the word 'tragic' lightly and, whilst I wouldn't describe myself as being 'glad' to know that others are suffering too, it does bring me comfort to know that you guys and gals out there know what it is like to have your one and only life taken from you. I am a 29 year old Irish boy (OK, a young lad!) currently residing in southern Ireland. In short - my life over the last 10 years has been unbearable. I presented with low back (lumbar region) pain 10 years ago this month whilst football training with my university team. I was a sports-mad youngster at the time. The pain was terrible and I was run through the usual tests in hospital - MRI Lumbar Spine etc. Everything was normal except the Chest X-Ray, which demonstrated an abnormality. In short - orthopaedic back specialist out - lung specialist in. I was now run through the usual tests for sarcoid markers, and a definitive diagnosis was given - acute pulmonary sarcoidosis. Here's the catch: I was informed that I was likely to experience sarcoid symptoms in the near future, although I didn't seem to be presenting with any at the time of the tests. However, no explanation was given for the excruciating back pain. The doctors did not think that this was caused by sarcoidosis. We move on. Five months later, the breathing problems, cough, skin problems etc. set in, thereby seeming to confirm the diagnosis of sarcoidosis. Hooray, he cheers ironically! I have a disease at last! Yes, he has still managed to retain his sense of humour. Anyway, since I really only needed a steroid inhaler for the breathing problems, and since my 'back problem' was a mystery, according to the doctors, I managed the regular symptoms fairly well over the next 5 years - all except the back pain that is, which forced me to retire at aged 19 from all the sports that I loved. All that pain and mental anguish, but no treatment and no explanation. Time and again I went to the best orthopaedic surgeons and physicians, only to be told that my back appeared perfectly normal, and time and again the sarcoidosis experts said it was almost definitely not being caused by my sarcoidosis. And yet I couldn't bend or rotate at the waist due to the pain and stiffness. We move on. Keep up - it gets even better. In 1998, after 5 years of back pain (in addition to the relatively mild, so-called 'regular' sarcoid symptoms) I started to experience excruciating pains in my left hand/wrist and my left knee - no swelling - just pain. Bone scans etc. were performed, and guess what? Nothing showed. And yes, the doctors once again could provide no explanation other than - it's unlikely to be sarcoidosis! These symptoms have continued without remission until the present day. But there's more. 3 years ago the back pain spread to the left thoracic area, and all hell broke loose. I started to experience ferocious pain in my mid-back (left side only) at thoracic level, horrendous chest pain behind and to the left of the sternum, radiating pain in the left ribcage when breathing, shooting pain up the left side of the neck which appeared to come out my ear (as with an ear infection), pain in the oesophagus when swallowing, and my entire back to the left side of the spine seized up from my ass to my neck. I then started to feel terrible throbbing in my left arm. I was unable to rotate at the waist or the neck without violent bursts of 'electrical' pain in all the affected areas of the spine. To this day, I am totally crippled from the pain and stiffness. Over the last 3 years, several of Ireland's best doctors have tried to make a definitive diagnosis, but to no avail. Everyone acknowledges that I am crippled by something, but nobody knows what. And yet each time a consultant in a specialised field (from neurology to orthopaedics, rheumatology to gastroenterology) failed to uncover any abnormality, I was referred back to the sarcoidosis specialist with the accompanying line: Is there any chance that it is the sarcoidosis that is causing these problems? Only to be told upon review by the sarcoid experts that it is unlikely to be sarcoid. Why? Apparently, my sarcoid markers have been decreasing since 1999 and, as a result, the experts expected me to go into remission at any time. They refuse to acknowledge that all of these crippling symptoms could be caused by sarcoidosis, since my markers are down. This despite the complete absence of any other possible cause. The doctors believe that I may have another disease which is acting concurrently on my system, and which they have been unable to uncover.I have been tested for everything, believe me - Lyme disease, Rheumatoid arhritis, all the usual suspects. You name it - I've been tested for it. Finally, last year, in addition to the aforementioned problems (which are constant), I started to experience impairment of concentration, dizziness, lightheadedness, confusion and disorientation - especially around bright colours and whilst driving, and difficulty focusing on objects (My eyesight tested ok, however, at the local optometrist). Now, it's one thing to be crippled with pain, but when the brain starts going, one becomes extremely worried. As we speak, I am a crippled 29 year old university graduate of law, french and civil engineering (well, working was impossible, so I kept going back to University!) who is now losing the ability to read and think straight. I am unable to work, as I can't even sit in a seat for 5 minutes. And what are the sarcoidosis experts doing next, you might ask? I am having another full-spine MRI in three weeks (my 11th) so that they can tell me again that sarcoidosis is NOT causing my problem. Now, I've always been a fighter, and indeed I may be going bonkers, but it seems to me from reading all of the personal experiences posted here that my supposedly non-sarcoid musculoskeletal symptoms are quite common amongst my fellow sarcoid sufferers. Is my sarcoidosis causing my problems? Or is it some other disease, as some of the doctors have hypothesised? It seems to me folks that the only thing we can be sure of is that these experts really don't know much about this disease at all. And whilst they are trying to figure it out, we're travelling to hell and back - and then some. Anyway, thanks for listening. I hope my symptoms may ring some alarms. In any case, be strong and keep in touch. It could be worse. No, actually it couldn't. Go ahead. Feel sorry for yourselves. It's about time someone felt sorry for us. Anyone who feels like having a little moan - well, I'll be right here to lend an ear. It's good to talk. Take care all of you. Colin
April 03, 2003 - LaRhonda My name is LaRhonda. I recently left a comment about this disease that we all have called sarcoidosis (see Oct. 28, 2002). When I e-mailed back in October of last year I was back at work. But now I'm home again. My doctor says he wants me to sit home at least a year. But I know it might be longer because my sarcoidosis is in Stage 4. I also know that God can and God will. In November, 2002 my oxygen level went down to 38% (it's suppose to 95% to 100%). But through the help of the good Lord I'm still here. I'm now on 100% O2 theraphy. I also was put back on the famous predisone. I have gained over 40 lbs in this short time. But as of Friday (March 28, 2003) my doctor told me in two weeks I can stop taking the steriods. I was so happy. I'm still walking around with an oxygen tank on my back but, I'm still here! My doctors told me that if I had collapsed with my oxygen being that low I would have died. God is GOOD! I'm a 28 year old black female. If it can happen to me it can happen to you. My advice please follow your doctor's orders and please keep ALL of your doctor's appointments. God has continued to bless me and he will do the same for you. If anyone has any information on this disease please post. Let's pray for each other. No weapons formed against us shall prosper.
April 02, 2003 - Kathy I just found out I have scaring on the top part of both of my lungs. What can be done about it? Is it serious and what is the outcome?
March 25, 2003 - Eric I think diet is a very important aspect in combating any dieases. Intake some high usesful nutrients in our diet and also keep excise rountinely. I also have some symptoms of sarcoidosis or even worse but I still believe that human is a so fantastic and complex, and it has the autoimune system in body that will cure the illness naturally. Keep the healty life although maybe you got the illness, don't think for stop your life because nobody can know what will happen in the future, and there is probability for illness treatment found. Just keep you normal and healthy life pattern, God will bless us if we have the courage to face the demon and God is always with us.
March 23, 2003 - Anthony I am a thirty nine year old black male, I was first diagnosed with sarcoidosis of the lungs in 1994 and have been receiving steroid treatment ever since. In 1999 the disease had started to affect my muscles to the point of deterioration, after a number of misdiagnoseses and interruptions in treatment. My question is, is there any medication that is available that will help repair my muscles and remove this pain from throughout my body, prednizone does not seem to work?
March 18, 2003 - Cherrie Hello! I'm a 22 year old black female from New Orleans, LA. My 53 year old mother was diagnosed with sarcoid a few years ago, but before the diagnosis, she was thought to have bronchitus (forgive my spelling). For many years, she has been a patient at Charity Hospital. She would have doctor visits every month and when she would tell the physician about her fatigue & rapid weight loss, he would tell her that she's just getting OLD. One day she decided to apply for SSI, and their procedure is to be examined by their physician for approval. Their physician noticed that her X-ray seemed to be odd. He asked her questions about her condition, and possible symptoms. Then he told her that it sounds like sarcoid and to bring his assessment back to Charity Hospital. If my mother had never applied for SSI, she'd probally would be dead about now. First the sarcoid was in her lungs and now it's in her spleen, kidneys, stomach, and liver. She mostly complains about how swollen her stomach is and that sometimes it hurts really bad. All those years she's been under Charity's care, and they never noticed this serious and deadly disease. My mother's doing fine now, but she still have her bad days. Somedays she would be up in a flash; cleaning the house, playing music, etc. and somedays she would be in the bed all day complaining about fever, stomach aches, etc. I was very surprised to see this wonderful site! My mother would always tell me that no one understands what she's going through and now she could see that not only her, but people all around the world can relate to what she's going through. I'll pray for you all that one day we'll see a cure.
March 17, 2003 - Danielle My mother was diagnosed with sarcidosis in 2001. She has chronic problems with breathing and her lungs are always inflammed. The doctors say that more than likely she will die from suffocation can anyone refer me to an on-line support group thanks.
March 12, 2003 - Patrick May 2002, my 61 year old mother was diagnosed with Sarcoidosis. August 2002, she suffered from a stroke, and she is partially paralyzed on her right side (Aphasia), she has no movement in her right arm, walks with a quad cane and her speech is so severe if you didn't know what she was trying to say or have patience, you would get very frustrated. Also, she has fibromalygia, her feet and ankles stay swollen, and she has shortness of breath. She tells me how bad she feels and how bad she wants to get better, but the Sarcoid and Fibro is enabling her to get better with her stroke. This is a woman that walked two blocks and had a cup of coffee on her front porch and within a half hour she had a stroke. I am basically the primary caregiver because her 80 year old husband can't do very much for her. She is on thyroid medicine, blood and heart medicine, predisone, aspirins, pills for calcuim, bones, etc., and it seems nothing is helping her and I feel so helpless. Can someone tell me what I can do to help her through her misery?
March 08, 2003 - Patrick I know this is a hard time for all of you who are suffering or have loved ones who are suffering. Don't forget that sleep and the will to survive are half the battle. Also remember that worrying and fearing about what is to come will worsen the situation drastically. I have found that in situations like these you should just tell yourself everything will be O.K. and don't deprive yourself of sleep. Don't underestimate the power of you brain, modern medicine will not fix everything, in fact, I believe that understanding all the workings of the human body is not the key to health and happiness. Mother nature is much smarter than we give her credit for. But I don't think she's ready for us to discover how we work right down to the very last genome just yet. Of course, all the pollution, radiation and just plain crap your body has to deal with in the modern day world is not helping your health at all. I believe the key to health is the natural way. Move into a forest and try to live. Having a lot of practical know-how is very satisfying. The dependancy on modern medicine and technology has come to the point that if it was taken away from most peoples' lives, it would be like kicking someone's crutch out from under their arm. Of course, all my theories could be wrong seeing as how I am only a fourteen year old lacking the years of experience required to become a mature person, but at least I am using my brain.
March 05, 2003 - Ave I am 48 yr old Irish, cauc. female. I have had 5 children and several miscarriages. I was previously diagnosed with Lupus having a positive ANA and symptoms. I was placed on Robaxin and Relafen, later Bumex for water retention and Cardizem for heart pains. Later they added Prevacid for GERD and Imdur plus nitroglycerin for chect pains. Finding it difficult with my IBS, the doctor added Pericolace and Sennakot to the list of pills and another to stop the nightimte shaking in my leg. All in all I was taking a lot of meds daily and noticed I was stable but always feeling lousey, always aching, tired and increasingly forgetful. Fibromyalgia, Chronic Fatigue, GERD, IBS, Diffuse Bursitis and Diffuse Tendonitis were added to the list of diagnoses. Then one doctor added osteoporosis. Later a new test ruled out the Lupus and so I started to avoid doctors all together for a while. When I got the courage up to try and take control of my life I opted for surgeons to correct whatever was wrong, big mistake. Some surgeries had to be repeated and some I never healed right from. I tried some corrective surgeries to see if that would work. After 15 surgeries in 6 years I am here to say I feel worse not better than before. A couple of months ago a small lump under my chin began to harden and enlarge. I thought it was a lymph node and ignored it till it became large and painful. Meanwhile my right foot started to ache like a broken tooth and the physician's assistant sent me to have it x-rayed. She referred me to an ENT for the lump in the neck who in turn referred me to another ENT who performed and FNA to tell me it was a Neoplasm and needed surgical removal. She also sent me to a Gastroenterologist for a Colonoscopy but it didnt find the source of the abdominal pain. Now I am supposed to still have both stomach surgery and my gall bladder removed at the same time, yet can't help think that since these other surgeries didn't help like they were supposed to, perhaps that is not the answer anymore. I don't know what stage my Sarcoidosis is at. I just had the ACE test done and a new chest x-ray taken. My primary care physician says the only thing to take is prednisone, but I am already obese and wouldn't dare take it again. I am already over 300 lbs and that made me think maybe I didn't have the Sarcoidosis as many lose weight with it. I sure dont. I suppose it is time for another rheumatologist. I think it has somehow affected the back of my head as I have a real loud non-stop squealing in my ears that is sometimes deafening and also a dimming in my left eye with spots that make it impossible to see clearly out of anymore. I have to go back to the eye doctor but my vision is now up to trifocals and changes frequently. Thinking has become a chore and short term memory loss is a joke to my family now as they know I don't remember many things during the course of the day. I used to be very reliable yet now I don't know. Any info and encouragement and possible avenues of remedy would be greatly appreciated and I hope that all who read this be blessed by our Lord and find remission. Last week I went for that surgery to be told after wards that I had a granuloma and it was called Sarcoidosis and now am finding that all my seemingly unrelated symptoms are finally coming together to make some sense being part of a disease that makes no sense. I was told 4 months ago I was post menopausal when I never had menopause! I hear now that that is yet another symptom of this nightmare. I have an enlarged heart, spleen and gall bladder. I have had asthma for years. My skin hurts all the time and I would feel these little pea size lumps from time to time that burned, yet after a few months would disappear. When I was pregnant with my 3rd child, my jaw hurt so much I finally had all my teeth pulled still finding no relief. I wonder if this too was part of this disease as when my teeth were pulled, each had a little cyst or tumor on its end that the dentist couldn't explain. I get numbness in my face and neck, sometimes in my arms, hands and feet. I get leg cramps that are deep inside that wake me at night as also suffer sleep apnea. Is this the usual progression of this disease? When does it become dangerous? or is it already? Any info is well appreciated. Ave
March 05, 2003 - Michael I was diagnosed as sarcoid in April 2002 and was prescribed Presidone. I declined to take the medication after researching its side effects. I was able to reduce and almost eliminate the problem, to date, by aerobic exercise, mainly indoor running. This helped to clear my lungs and improve my breathing. My doctor was surprised at the rate of improvement.
March 04, 2003 - Stephen Hi, I am a 46 year old Australian male, and I have had Sarcoidosis for the past 10 years. Up until 1993 I was a healthy self employed Antique Furniture restorer. I contracted influenza quite severly which took a long time to shake. About 1 month later I developed a severly infected herpes simplex on my lip and ended up in an isolation ward in Hospital looking like a giant bullfrog. Consequently the hospital did some exploring and discovered my lungs were very cloudy. At about the same time I noticed unusual skin lesions on my arm and chest which resembled ringworms, these were later diagnosed as granulomas. I was sent to a pulmonary specialist and he informed me that he suspected sarcoidosis but would need to take a sample of my lung to confirm this. Being naive and inexperienced with ill health or doctors I went along with the whole thing. They did a biopsy which failed to produce a result and left me with a deflated lung. I was then sent to a surgeon and booked in for a more intrusive biopsy where they entered through my back and extracted a small wedge from my lung. Up until this time I felt perfectly healthy. The biopsy took months to recover from and in that time I discovered that a simple biopsy of my skin lesion would have produced the same result. The specialist was happy he had his confirmed diagnosis. I was a mess. I was then put on 50mg of prednisone per day which was eventually reduced to 15 mg per day. I felt bloody awful for about 3 years, had to give away the business as it involved using chemicals, exposure to sawdust. I breathed some fairly toxic substances before I became sick and have since met 3 other Antique Furniture restorers who have suffered from Sarcoidosis. (Perhaps some study should be done, Are there other furniture restorers out there with these problems?) I had a period of time where I thought I was feeling better and decided to go off the prednisone. Unfortunately the xrays got worse and I started to feel fairly ordinary once again. I went back on the prednisone and got down to about 15 mg per day and felt OK but things were not getting any better on the xray front. That is when my beloved specialist (old school, but prepared to try new things) was introduced to Methotrexate. I was his first patient to try this new drug. I have been on it for the past 18 months and it seems to be working OK. One thing I have noticed by reading letters on your site is that no one appears to take prednisone and methatrexate at the same time. I take metatrexate once a week 12.5mg ( 5 mg folic acid day before and day after) and 10 mg prednisone per day. I have regular blood tests. Is this unusual combining the 2 drugs? I must say I feel good most of the time but have noticed my breathing under exertion is very slowly getting slightly worse every year. I was somewhat sceptical about doctors for some time but believe now that they do their best with the drugs available and thank god I don't live in the 19th century. You mostly look OK, do things the same. When I used to try to talk about how I felt even with close friends and family people pretty much nodded sympathetically but actually glazed over and don't really want to know about it. I believe the disease aided marriage breakup, I just couldn't keep up with the things expected of me. I needed rest at certain times, sometimes for days on end. In the famous words of our most infamous ganster Ned Kelly before he was hanged "Such is Life". I really believe this disease can be contained and we can live a good quality of life, as little stress as possible ( a huge thing). Regular walking or light exercise and a good healthy diet (& lots of afternoon naps). I know these things are "thrown up" regularly as a guide for healthy living but I firmly believe these things are even more important for people with chronic diseases such as sarcoidosis. Anyhow, thanks for reading my little rave, stay positive and keep smiling. Cheers Steve
February 26, 2003 - Tina Hi, I am writing in hopes to find if there is anyone who can help me find information on sarcoidosis of the bones. My sister is 31 and has this torminting disease. Her doctor told her that she has sarcoidosis in her bones. Painfull lumps on her feet was the first tell-tail sign. She is having pain in her jaw and thought it was a tooth-ache and found out it wasen't. She had a bone scan today and is waiting for the results. I guess my question is, is there a website that I can go to to find out more about sarcoidosis of the bones. Her doctor told her that this isn't that serious. I feel it is!
February 24, 2003 - Lisa I am 99% sure that I have Sarcoid. Over the years, I have had the lesions on the nose that last 3-4 months at a time but do return. I have had the Uveitis/Conjunctivitis in the eyes. I had to have surgery to clean this out. I have inflammation in the espohagus. I have bluish red patches on the inside of both knees. Some scarring appears at times on chest x-rays and on a Lung CT scan. I am tired of feeling tired. Recently I had a lung biopsy and it showed nothing. But, then I put in my symptoms in a search engine and it comes up with Sarcoid. I live in Houston and have seen a host of various doctors for each body area complaint. Sarcoid was never mentioned. I went through mounds of papers from various physicans notes and just discovered one doctor's notes wanted a muscle biopsy and treatment with methotretrate and IV cortisone treatment. This was never done. Now, I have kidney stones. No one in my family has ever had a kidney stone. Does anyone know of a doctor in Houston who has treated/diagnosed Sarcoidosis. I need to be on the right highway. Thanks so much.
February 20, 2003 - M. Kettler I was diagnosed with sarcoidosis a little over a year ago. It is in my lungs and now it is in my joints. The lung specialist put me on prendisone. I was OK for awhile but it is starting to act up again. I know he will put me back on prendisone again. I really hate the side effects I get with them. The last time I gained sixty pounds. And my joints ached more than usual. My sister has this lung disease too, but her symtoms are not that bad and I hope and pray they stay that way. Good luck to all of you who have this lung disease.
February 19, 2003 - Gwen About 10 years ago I was diagnosed with sarcoidosis. It has been in remission ever since. I had experienced blurred vision. I had gone to several doctors, and no one could figure out what was wrong with me. I then was referred to this older woman, an opthamologist for over 30 or 40 years. she immediately ordered a chest x-ray, and saw the lymph nodes in my chest were swollen. a lung biospy later confirmed sarcoid. I was put on steroids and antibiotics. She recommended taking vitamin c at least 500 to 1000 mg per day, and b complex with time release. I do still have difficulty with breathing, but I manage my sarcoid with supplements and balance diet. I also, don't work as hard as I used to. I am happy to say, I have not had such a full blown incident as initially. I am very surprised to see a lot of people mention taking inhalers, and asthma medication. I was told these medications were useless with sarcoid. One woman wrote about her husband having sarcoid, and it is affecting his brain, and that he is on the steroids daily. She mentions she would like him to come off of the steroids, but then she mentioned, that he works 70 hours a week. Sarcoid is aggrevated by stress. You must get your rest. If you are not having much success, keep looking for a doctor who is educated about sarcoidosis. Dont keep going to a doctor who is experimenting with different medications.
February 16, 2003 - Lucille I have been just been diagnosed with Sacoid in my lungs and my heart. I have 4 beautiful children who have no idea I'm even sick. Back in 1999 I was diagnosed with viral menegitis. These two are strangely related. They're not sure if its heritary, but I'm having my 6 1/2 year old son checked out in Boston since he is showing signs of this disease as well. It's bad enough I have it but if my son has it too I'll be devastated. The pain at times unbearable. I'm waiting to hear if its spread to my brain. I'm a 36 year old woman. Time will tell and hopefully will heal. My heart goes out to you all for being brave and continuing on with life the best way we know how.
February 12, 2003 - Elaine It is truly a pleasure to have someone else understand what you are going through. I was diagnosed with sarcoid several years ago by having a biopsy of my lungs to make sure it was not lymphoma. How blessed I was that it was not cancer, although I had no idea this disease was so horrible. My pulmonary doctor monitored me on a yearly basis but never treated me. I went to a Specialist in New Orleans who immediately put me on 60 ml on prednisome. The only symptom I experience was shortness of breath but since the disease was in my lungs, liver and spleen and my ACE level was pretty high he thought I should be on the medication for at least two years. Well I am a believer in Christ and with much faith in Jesus and prayer of the saints I was only on the drug for about six months. I know that the Lord healed this disease, but it has flared up again. "You may say what happened to my Blessing, Well I'll tell you, even with faith in God, faith without works is dead. The point is as a sarcoid patient we have to make sure we get the amount of rest needed and as hard as it may seem, we have to attempt to stay out of stressful situations. I have found that this disease is activated by lack of rest and stress. I have allowed myself to get so busy that I have not taken care of me and now I have to deal with the consequences. I wake up at night soak and wet from sweating, my body aches and pain shoots through head, arms, hand and feet. I am breaking out with mole like bumps on my body and I am so tired. I have seen the doctor and a chest xray, breathing test (which I failed) and blood work has been performed. I will meet with him on Tuesday to get the results and find out just what he plans to do. I am going to be taking a trip to GNC for vitamins to help build the immume system. There are doctors in all of our local cities called doctors of natural medicines and I will be paying him a visit to see what vitamins he recommend. I believe if we work hard at taking better care of ourselves, take the necessary vitamins needed to help keep our immune system built and continue to comfort one another in our time of need we will all be a better people. Please continue to share your good times and your bad. Love to all of you and God Bless.
February 12, 2003 - Marie I learned that I had the disease in 1991. I stay so tired and the medications made me gain a lot of weight. Just about every night I start to break out into a sweat. I cough all the time, shortness of breath. With all the weight that I have gained, I should weigh only about 100 pounds due to the fact that everything I eat comes back up. I believe when I talk about this illness no one believes what all it does to a person. Like I'm making things up; however, I find myself getting upset with the doctors every time I go to the hospital and I need to be checked for other things wrong with me and they say everything is due to this illness. We have to stick together and pray for some type of help with this thing.
February 11, 2003 - Laura I have read some of the more recent comments concerning sarcoidosis. I was diagnosed in 1982 and was given prednisone to arrest the lung condition. I had a very low tolerance for the drug, so got a maintanence level for 8 years. Tried the pump one winter to no avail. During this time I continued to work as I had two young children to support. In 1990, although my lung tests and stress tests were becoming worse, I opted to give up the prednisone. The drug was causing too many side effects and not helping the condition for which it had been prescribed. I simply refused to take pills to counter the effects of the drug. In 1997 a blood test showed that the sarcoidosis had gone to the liver so my doctor insisted it was time for me to retire. In 1998 I saw a new specialist. From the MRI results she thought I had about six months to live because the cancer was so bad in my lungs, the right in particular. Of course she had a letter from my Doctor stating that I had been diagnosed with sarcoidosis. I still cannot take prednisone as I have a very low tolerance for it. I like to be in control of my brain and with this steroid, my head is scattered. This doctor also expected that I would be in a wheelchair by 2003. Well it is now 2003, I am not in a wheelchair and the good Lord permitting it will be some time before I face this challenge. However, as others have stated the conditions are not consistent or common among each member. I have read that it is refered to as the mystery disease because there are so many symptoms according to the individual lifestyle. Fatigue, breathlessness, sporadic pain and rash like conditions, extreme reaction to cold/flu viruses, watery eyes, intolerance for severe cold and extreme heat. I no longer take any medication, make my own food and baking (seldom touch take-out of any kind) and try to relax and accomplish things at my own pace. Every day, I determine to climb the stairs, do some housework and maintanence, and be mobile to whatever my capabilities are. Since each day is a new day and a new experience with whatever symptoms feel like manifesting themselves at the time, I try to remain as active as possible within my capabilities. Basically, you have to find your tolerance level and live within it. I, like others, have given up on steroids as they do not help. Be at peace with yourself and live the best you can. I think sometimes it is God's way of slowing down very active people as many of us seemed to have been before we faced this new challenge.
February 10, 2003 - Margaret Great pages - Doctors seem to think it's a very liveable disease without many side effects. I've had two strokes, a brain aneurysm, and my immune system shut down. Then fibromyglia came on, headache, and pressure in my chest. I thought I was having a heart attack and went to the floor for 3 hours. I hurt so bad and got to a hospital next morning and ran heart cath test. It showed swollen lymph nodes. I did two more tests and they came back sarcoidosis. My doctor is just going to watch it every 3 mos - no medications. I get so tired all the time - hurt and I wish someone would correspond if similar situations.
February 06, 2003 - Keith I was diagnosed with sarcodosis in October 1996. I was been on 40 mg of prednisone and down to 20 mg, and then completely off of it. After about 8 years it flared up again. X-rays revealed inflamed cells in my lungs. I have been doing ionized foot baths which pull the excess mucus and infection from by lungs. The first time I did a foot bath, my breathing was 95% better and I had no congestion. It lasted for about 3 months. Plus I take about 500-1000 mg vitamin C daily and a teaspoon of collodial silver. My next x-ray revealed that my lungs were back to normal.
February 06, 2003 - GS Not so, a lady had a lung transplant that had Sarcoidosis in TN. She didn't make it though after being hospitalized half a month. Not saying that might happen to anyone else. I am not familiar as to the name of the Doctor though. It could be researched. Not sure if a pilot program ensused or its don't more often or not. For a fact it has been done, at least once I am postive of. Have a good day.
February 04, 2003 - Lisa Right before Thanksgiving of this year, I was diagnosed with Broncitis. My doctor gave me an antibiotic, that didn't seem to clear it up. He prescribed another antibiotic that didn't work either. After the third antibiotic, I still had a cough. I went in to see the doctor and he advised me that the Broncitis was gone. I still had an uncontrollable cough. In mid-January, I had a cough so uncontrollable that I had my husband take me to the emergency room. They took an x-ray of my chest and measured my oxygen level. My oxygen level was at 100% and my x-ray looked fine and they sent me home. The next morning, the ER doc called me & said they found inflammation around my lungs & called my primary. I then had a CAT scan that was negative & my primary called a specialist who said that I either had Sarciod or Lymphoma. I had a biopsy last Thursday and am still waiting on the results.
February 03, 2003 - HN I have a question for Jonathan (July 31, 1999). What alternatives abnti-inflammatory he uses instead of steroids. I am 46 years old. I was diagnosed to have sarcpoidosis in 1985 and I have to take steroids regularly otehrwise it flares up. Recvently my condtition has got worse as just walking in the room makes me breathless. I am also intereted to find out information on the use of Electromagnetic field and any information on the success rate. Many thanks.
January 29, 2003 - Ethyle Hi; I have just read about everyone and their symptoms. I discovered I had sarcoid at the age of 40 I had every symptom, shortness of breath, throwing up, lose of weight (every week) headachs, pain in my stomach. It was so bad, one evening I just could not breathe and my husband rushed me to the hospital. I was diagnosed with severe asthma. I stayed in the hospital for days and was released. The symptons returned and I was not able to walk without coughing and gasping for breath. My neighbor sent me to her internist, X-Rays were taken, and yes both lungs were filled, they were black. I was put into the hospital immediately. I was given mega-doses of prednisone. I gained weight, but I was able to function. This was in l974. They say I am in remission. I don't know. I am now having trouble with my eyes. I have gained weight, dizzy and stomach trouble. I am always afraid that the sarcoid is coming back, especially when I start to wheeze. I do not couph. P.S. I did have an operation and my lymph node was identified as sarcoid. They suspected lung cancer and were ready for the worst. My doctor said it was very unusual that a White Jewish girl would get sarcoid. What do you think? Thanks
Dear Deborah, (January l, 2003) I read your comment. I am also on advair, and albuterol. My doctor does not say it is because I have sarcoid. He calls it asthma. I don't know how bad your wheeze is but please be careful. I only take the albuterol as needed. My doctor says I should take the advair every day. I don't. There are days I feel wonderful, sometimes a week or two weeks can go by and I thank God that I don't have to take anything. But, the minute I go outside and it's windy or very cold, or for that matter very hot, I am reaching for the albuterol. Gasoline fumes, lighted candles can also set me off. If this happens to you, maybe its asthma and not sarcoid. At least that's what my doctor keeps telling me. X-rays show that my lungs are clear, but I at times have a rough time breathing Hope this helps you. Etty
January 28, 2003 - Karen I am a 51 year old female of mixed race from New Orleans and have suffered from Sarcoidosis for at least 15 years. Since being diagnosed, I have retired from my job as of last year after suffering 2 collapsed lungs. It was a real fight for survival but I am still hanging in there and trying not to get discouraged. The procedure they did to repair the lungs has left me in pain almost all the time. I am told that they had to repair by stapling the damaged area. I have also endured catharact surgery on both eyes and am suffering from another flare-up of retinitus in the left eye, which I am taking pred forte drops 4 times a day for. I have been off and on prednisone over the last 14 years and am currently on 20 miligrams per day. I was happy to read some of the comments and know that there is such a diverse racial make-up with this particular disease, because maybe that means that they are getting closer to finding out just what causes this disease and maybe there is still time for me to benefit from a cure. I would appreciate hearing from anyone else who has had similar problems stemming from the disease. Also, if they are experiencing any pain in the diaphragm area since having the surgery. Hang in there and May God Bless!
January 26, 2003 - Carol How wonderful to find this site. It is good to read your comments. It helps me feel not alone in this fight for breath. I had non-hodgins lymphoma in 1991 and took extensive chemo. God healed me of the lymphoma but now I have had sarco for about 3 years. I have had many other problems other than shortness of breath but I had not connected them to the sarco until I read your comments. I tend to think if I just try harder I can work like I used to, but that is not true. I have trouble even keeping my house clean. I have trouble bending over. I have severe lower back pain. (A) I used to have severe leg cramps but I started taking coral calcium and it has almost stopped the leg cramps and my spine is more flexible now, also my hands. My circulation has improved. (Bob Barefoot's coral calcium) Bob Barefoot is a Scientist and his calcium is the purest kind from Japan. (B) I had severe dryness in my eyes and internally since the chemo then I learned of a product that has helped me, BioChoice by Dupont/ConAgra. It helps me to feel 20 years younger. It fights infection. When I started taking it, I had a badly swollen foot from a spider bite and had been on 2 antibiotics for a month with no improvement. I took the chocolate drink twice and my foot was normal again. It also helped my son bring his grade point average up from 1.97 to a 3.0. He says it helps him focus and concentrate better. (C) I take glucosamine sulfate for soreness. It is much better than the pain killers like excedrin even though I like excedrin for a headache. (D) One very important thing is to take a Potassium supplement. The predisone depletes the body of potassium and if you do not replace it, it gets difficult to think, and everything starts to shut down. My doctor said I would need to eat a bush of bananas a day to get as much potassium as I need. (E) It is also important to go to GNC or a good health food store and buy a couple good anti-oxidants (fights diseases). It is like rust forming on iron. The anti-oxidants keeps the rust from forming. I take betacarotene and grapeseed extrate. (F) If you know any one who has to take chemo, tell them to take beef liver (high in protene). One doesn't eat well when taking chemo and the beef liver keeps one strong during the treatments. It also helps to keep the blood count up so one can take the treatments without wait for the medication to be adjusted to what one's body can tolerate. (G) For strength I take Bee Alive. Bee Alive is the food the Queen Bee eats. She lives 6 years while the worker bee only lives 6 months. If she is removed from the Bee Alive, and eats the regural diet, she too only lives 6 weeks. When I take the Bee Alive I can move my heavy dinning room chairs with ease, when I run out of it, I can't budge the chairs. My strenghth leaves me without the Bee Alive. It is important to drink plenty of water. We are made up of a high percentage of water and need a lot of water to flush out our kidneys and keep us feeling as good as possible while we deal with our breathing problems. Having faith in Jesus is so important. We are all just a breath away from eternity. He paid the price for our entry into heaven. Pick up your ticket today, its free. Bless you. Each of you will be in my prayers each day for your full recovery. I have had sarco for about 3 years. I asked my doctor why it bothers me so much? He responded, "Well, Carol when you have 10,000 of them." About a year later, I thought I would try to ween myself off of the predisone and the sarco got worse. I asked my doctor, "If I have 10,000 of them, how could they get worse?" He responded, "They grew".
January 24, 2003 - Mrs M P N I need to know of a specialist in the UK that can help my son-in-law with sarciodosis.
January 22, 2003 - Richard My name is Ric. I was diagnosed with sarcoidosis of the lungs in June 1978. I have been in and out of the hospital for several things. Most of my hospital experiences were sarcoid related. I am hoping to find some type of relief from this most uncomfortable situation. I am presently taking flovent, serevent, Prednisone and cough medicines. I was 27 when I was first diagnosed, now I am 51. I have suffered for a long time. But I will not give up. I am very thankful to God for allowing me to endure this overwhelming ordeal. I am sorry not to have anything that will bring relief to everyone else except stay strong. I appreciate this Web site. I need some info to help me cope with this sarcoid. Thanks
January 21, 2003 - Brenda I'm posting here to see if anybody out there can give any advice. I've had trouble breathing for quite a while now. I get in our hot tub and feel like I can't breathe. There are so many differant things I can't do. Last year I got very sick with a heavy dry cough. My doctor couldn't seem to clear it up. My chest hurt really bad. That was last winter when spring and summer came I still had the cough some and garden work was hard. I ended up twice in ER thought I was having heart attack but they couldn't find anything wrong. Had a couple spells after that. The doctor said I did too much physical work. I went for a stess test and it came back ok. Still didn't feel good. Then it is winter and a couple months back the doctor decided maybe I had asmtha. He gave me an inhaler and some nasel spray. It didn't seem to work. Well here it is winter and a year later and I had a attack of some sort. I was in a card shop and they had all kinds of gifts and candle and perfumes, I got coughing had to leave store.. Had a 40 minute drive home finally got my coughing over with landed with chest pains sore thoat. That was on Thursday. Saturday I called my doctor, he said maybe I coughed to hard. Said it didn't sound like asthma and to put a heating pad on my chest. Here it is Tuesday I don't feel much better. I decided to get second opinion and I go Friday. I think I need a new doctor that will do some testing. I never had a test. I might add to everything smoke -heavy lifting - physical activies breathing in cold air get to me. We have a farm so I'm used to heavy work. Feels like my chest is filled with cold air. Can I get opinion from someone? Thanks
January 18, 2003 - Lillian I am the mother of a 24 year old African American male diagnosed with sarcoid in April of 2002. My son began sleeping a lot, his eyes became swollen, he experienced fatigue, and rashes appeared in his face. After observing him for a while, I decided it was time to consult a doctor. After many many tests, sarcoid was diagnosed and we've been taking it a day at a time just like the rest of you dealing with this disease. The sarcoid is now in his face, his lungs and attacking his liver. He is on 40 mg of prednisone daily which his body is not responding to, along with 12 other different medications. He has a great pulmonary specialist, whom we are most grateful for and who is doing everything in his power to help get his disease under control. I am so grateful to have found this site for my son with him being depressed a lot - just to increase his awareness that he's not alone battling this disease, hopefully will give him some peace. With supporting people like you, doctors, and most of all having a God of your own understanding, this too shall pass. My prayer and wish for each and everyone of you is for good life, health and strength to stay strong and always look to God from whence all of your help come from.
January 16, 2003 - Ashley I am 19 years old, a senior in high school. I have been sick since the 7th grade. It begins with a rash on my neck, then my glands will swell up all over my throat, neck, and inside my mouth. Most of the time I have sore throats, and huge soars, on the back of my throat It has been a year since one of these relapses. Which I am greatful for, but now out of the blue I am getting sick again. I quit all extra curricular activities at school, hoping it would cause less stress, and anxiety would go down, which the doctors said was making me sick. I don't believe anything that the doctors tell me anymore, because everytime I see them they tell me something else is wrong with me. As I have found out a month ago, my mother has lupus, and I started to research it, and I find that I have every symptom, but the butterfly rash and vomiting all of the time. I need help in finding out what is wrong with me, because it is tearing me apart. I just need to know what it is, so when people ask why I am fine one day, and so sick the other I can defend myself when they say I am faking it.
January 14, 2003 - Kathy I am 53 years old and the day after Christmas I was given results of a PET Scan that said I had metastatic breast cancer to the spine, ribs, lungs, lymph nodes and adrenal glands. After many tests, bone scan, MRI and CAT and blood work they are questioning the results. I am having a lung biopsy on Friday January 17, 2003 that a Pulmonologist ordered to rule out cancer and find sarcoidosis. Back in 1986 I was diagnoised with Chronic Fatigue, Epstein Barr and in 1996 had breast cancer. I am not going to do the steroids. I have started a sugar free diet, no yeast and will go holistically. Does anyone have any holistic approaches to share?
January 10, 2003 - Hanifa I too have been diagnosed with Sarcoidosis in 1995. My mother had it but no longer has it. I was diagnosed from a biospsy and had legions on my nose. A doctor was giving me cortizone shots in my nose to make the swelling go down. By 1999 I began getting shortness of breath and could not fully understand why. at the time I did not realize the seriousness of it until recently just in December of 2002, I was in the hospital for two weeks due to congested heart failure. Symptoms were ankles swelled and I could barely walk. It is important to find out all we can and pass it on. I am blessed to have a knowledgable doctor who is also very caring. I too am on predisone and was on it in the hospital. I am being weaned off of it, however I will be going to a whoslistic M.D. due to other complications of liver now being effected. I am a firm believer in herbs and that predisone is good for one situation while effecting another, and this scares me. I pray I am going the correct path and I believe that god put herbs first. I don't want to take something to kill other organs, I want each one to heal in it's natural form. Also this is a blessing for those of you able to go back to work, it was unfortunate for me that they terminated me after receiving my disability forms. Rumors that I heard about through my co-workers that fact is I may be out too much, so of course they tried bringing something up that was not introduced at time of hiring. My heart goes out for I know what we go through and it should definately be looked and taken more serious by disability for this is a life threating disease. May we continue to pray for a cure and they take a deeper look.
January 07, 2003 - Dionne I was diagnosed with Sarcoidosis in 1996 by a very well trained Pulmonologist. I have level 4. I immediatly applied for Social Security Disablity and recieved it the first time around. I was 26 at the time of my diagnosis (I worked since the age of 14) and it trips a lot of people out that I do receive Social Security Disablity. I had enough quarters in at the age of 26 to recieve these benefits but, if you are not like myself you can apply for SSI/Supplemental income. It is not as much as SSD would be but every little counts. I am now 33 years old and I also recieve a check each month for my children. Thank God I did have the strength to work in the past or else I would not have been able to receive any benefits because SSI is based off of the income of your spouse and if they make too much based on the amount of persons in your household you are not eligible. SSD, as we all know, is based off of the monies you have placed into Social Security while you were or are working and then you have to have a certain amount of quarters in order to receive the payments. I just thank God that when I could work I was not lazy. I had management jobs working 13-14hr a day and I was also active duty military which is a 24hr a day job. The lady on the other end was quite surprised that I had enough quarter/payed in enough monies into Social Security Disablity in order to recieve it at such a young age. It can be done. I am living proof. And you can apply right over the phone. You will receive an answer about both before hanging up. Oh, and as far as what else can be done about this disease as far as treatment: Pray, and surround yourself with good, God fearing doctors and a good pain management doctor. I am suffering from so many illnesses due to the sarcoidosis I suffer from chronic pain and take pain pills everday of my life along with anti-depression medications and what ever else I need to take at that Time for what is alling me. Well.God bless you all and have faith in the man upstairs even though at times it is hard too, he understands.
January 02, 2003 - Doris Hi, I have been reading your comments on sarcoidosis. I was diagnosed with this disease about 9 years ago. I went to several doctors and it was suggested that I had rheumatoid arthritis, migraine headaches. The shortness of breath was probably because the arthritis had gotten into my lungs. At any rate, I only got worse. My joints ached until I could not put my feet on the floor to walk. I was extremely fatigued, out of breath, huge lumps in my arms and legs, headaches with blurred vision. I had no tears in my eyes, glands swelled under my ear lobes until I looked like I had mumps. I went to the emergency room, found a doctor who finally diagnosed me with sarcoidosis in the 4th stage. I was losing weight (which was a good thing). This doctor and a pulmonary doctor took care of me and of course I was put on 40 milligrams of predisone, along with a steroid shot every week. I was working full time and the doctor did not want me to work, so I was on 4 month leave from work. I took predisone for a year. I still take a shot several times a year to keep me going. I have noticed that if I over-work, I will be down for several days with aches, no energy. I do have a stressful life style and my job is stressful. I am 61 now and am thinking I would be better off not working. I have problems now with aches in my body and my throat fills too full. Have any of you ever had the full feeling in your throat and was that from sarcoid? My doctor said sarcoid does not have a cure but they are working on it. I wonder how committed the medical world is to finding a cure for this? Some doctors are not even aware of the disease. Thanks
January 02, 2003 - Nicolette My sarcoidosis started in my bones 10 years ago. I was thought to have cancer, myloma. I now have sarcoidosis in my lungs. In fact, I was told by my lung specialist that my lungs are only functioning at 48%. I still work and continue to do what I can do. I think the sarcoidosis is affecting my muscles now. I am having extreme muscle spasms in my feet and legs. I am taking robaxin for the spasms but still wake up at night with spasms. Is anyone else having this same problem?
January 01, 2003 - Deborah I first was diagnosed with sarcoidosis of the liver in 1977 when I was 18 years old. It was very active until 1990. Since those years I was hospitalized over 10 times in and out of the hospital with problems with my liver. An enlarged spleen was removed in 1981. My left lung collapsed in 1985. Twice the disease knocked me down but I got right back up on my two feet standing tall. The devil is a liar and I am a victor not a victim. Now the disease has come back, after 12 years, in 2002 in my left lung. I am back on predisone and advair and albuterol, taking lung treatments again. I fought it once and I am going to fight it again. I will not let it get me down. I have victory in christ jesus always and forever I will defeat the devil again. Satan will never win at all, never