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December 21, 1998 - Parshandatha Hello everyone! My mother has sarcoids. She has been taking Prednisone for several months, but has bad side effects. Now her doctor is starting her on chemotherapy and weaning her off the Prednisone. She lives in the southern part of Tuscaloosa, AL. There are several factories within a 20 mile radius of her neighborhood. I believe that these factories are a major cause of her health problem. Also, the ceiling in her bathroom has caved in. Water from the tenant's apartment upstairs has leaked unto her ceiling. You can look up and see a batch of wet pink substance hanging from the hole. My fiance thinks that the substance is fiberglass insulation. He wants it removed because it is known to be toxic and it's illegal to have it exposed. She complains to the management of her apartment complex, but they just do a patch job. They still have not removed the fiberglass. My mother is in a bad predicament. If she reports it to the health inspectors, she might be evicted. A previous tenant in a different building complained, and she was evicted. My mother is disabled and cannot work. Therefore, she can't afford to pay the maximum rent if she moved. Currently, her rent is scaled by her income. I have a younger brother and sister at home, so she is still responsible for two people other than herself. My mother's bedroom is next to the bathroom so she breathes most of toxic fiberglass. Both my younger brother and sister has sinus problems, but my little brother also has asthma. Due to her health, this Christmas won't seem so merry because she spends most of her day and night in bed. If anyone can give me information on chemotherapy, alternative treatmets, tenant's legal rights, or any form of support, please contact me as soon as you can. Thank you!
November 15, 1998 - Glenda My husband was diagnosed with sarcoidosis in 1984 when he came out of the military. Right now he is in the hospital undergoing a multitude of test. Last Friday he was practical died when I tried waking him to go to work and he did not respond. He had no vital signs, let's put it this way, he was dead. The doctors still do not know what happened. Prednisone was prescribed to him three weeks ago. I believe Prednisone makes the blood sugar or glucose level rise. They are presently treating him with insulin. He is not diabetic. If there is anyone presently on prednisone and is having symptoms like a diabetic please email me.
October 27, 1998 - Kathy I have a friend who was diagnosed with sarcardosis in 1982 after a severe car accident. There have not been any signs of the disease up until two months ago. He started with shortness of breath, chest tightness and also numbness in his left arm. He is currently on an oxygen machine at night because of probably sleep apnea. He also takes inhalers. Is there someone out there that has had this disease for a while and knows what course it usually takes once you have gotten to this stage of the disease? Is there some type of therapy and/or prescribed medicine to slow the course of the disease down or reverse the process? My friend is 51 years old and has not been able to do the things he loves doing because of constant shortness of breath and fatigue. He surrendered to preach two years ago and sometimes it is very hard for him to pour out God's message sent through him because of losing his breath so quickly. I would surely appreciate any and all information that could be sent to me via E-mail as soon as possible. Thank you for reading this, first and second, thank you for responding so quickly. May God continue to be walk with you daily and bless you with His healing power.
October 08, 1998 - Stacy I have found a wealth of information on these pages. This is a wonderful site. I am a 28 year old woman. Today I was diagnosed with Sarcoid. I have the lumps on my shins (erythema nodosum) and severe bone aching...like arthritis. My Rheumy doc did a chest x-ray that showed lung inflamation as well. He seems to think that I have a viral form of Sarcoid although he did not do any tests except the x-ray...not even blood work. He said this is a self limiting virus and I should be over it in a matter of a few months. In all the reading I have done I have not found anything to support his few month diagnosis. I would appreciate any comments or information anyone has in this area. I also am interested in the toxic substance causes. I live 4 miles from a toxic waste burning factory where they frequently burn Hydrocloric Acid and such substances. It seems everyone in the area knows someone with some sort of auto-immune disorder or strange lumps, bumps or cancer. Any response in this area would be helpful. I appreciate this forum and thank all of you in advance for your responses.
September 26, 1998 - Lisa I need some information. My hubby was told he has sarcoid about 5 years ago. He was working in a company that used a primer and he was always cutting cedar doors. After working for them, it all started; so he went through endless tests and finally it was discovered that he had sarcoidosis. He was treated and became better, but just several months ago he has become very tired and achy again. He complains of headaches all the time and sometimes just does not want to move at all. He is young 39 and I am so upset. I do not know what to do or say anymore; is there any help for him? Please help me find out what can be done.
September 13, 1998 - Rosanna I have been reading several comments regarding sarcoid. I was diagnosed in February, 1992 following gall bladder surgery. I have it in the lungs. Up until the last several months, I have been getting along fine. I have noticed that I am getting more winded, especially when having to go up steps or up any type of incline or when doing a lot of physical exertion. I am 55 years old employed full time. I love to golf and have continued to do basically what I want. The only medications I'm on at this point are inhalers. A month ago when I went to my family doctor, I told him of being more winded and wheezy. He immediately wanted me to see my lung specialist. I will be seeing him this next week. I do know that my lung doctor has told me that any steroid treatment will be the last resort that he will want to use and from what I've been reading as to those that have been taking the predisone treatment and their side affects, I'm not sure if that is the way I will want to go. At this point, my specialist may not even want to do that. I want to say thanks for this site as I have gained some insight. Thank you to those that have taken the time to write their comments and my prayers are with you.
September 10, 1998 - Sarah I just wanted to know if sarcoidosis and pulmonary arcoids are the same thing. I just received an informational email and the young woman seemed to be diagnosed with what she called pulmonary arcoids. It sounded exactly like the diagnosis for sarcoidosis. They found it through a chest x-ray and they were nodes that grow in the lungs and possibly other organs. Can be fatal if not detected. It affects a large majority of African American women between the ages of 20-40. I wasn't sure if she accidently left the s off of arcoids. I just want to know so I could be informed if sarcoidosis is being called another name. Thanks.
August 27, 1998 - Sheryl I would like to know if anyone suffers from paralyzation. I have some lung damage, but sarcoidosis hits my central nervous system and knocks me down (I shake uncontrollably, can't walk, can't hold a pen or fork, extreme joint pain). My doctor says I have a mild case. Ha! I hear of cases of bedridden patients with organ troubles and skin lesions. But mine hits me differently. Anyone in my shoes? Please help. I am on no medicine, but take St. John's Wort (similar to an antidepressant), Eccinacea, Gold Seal.
August 25, 1998 - Lovely Thank you all who helped me so much by responding to my questions about sarcoidosis last month. I thank you from the bottom of my heart. I have learned so much! However with Sarcoidosis, I still have lot's to learn. Can anyone out there tell me if they have ever taken Prozac with the disease or found that sarcoidosis has damaged your mental state in any way? I need to hear from someone who may be suffering from diabeties as a result of sarcoidosis. Please help if you can!
August 24, 1998 - Byron I was diagnosed with sarcoid a couple of months ago. Fortunately the symptoms discovered in my lungs and eyes are pretty mild, and don't appear to be developing quickly. Again, fortuitously I met someone at a family wedding who had suffered from sarcoid for 15 years. He advised me not to touch steroids as the side-effects had caused him more trouble than the disease itself. He had recently had an "allergy" test performed on him, and had been told which food products to avoid. (This seems like a sensible approach to me, given that sarcoid is something to do with the body's auto-immune system). The early signs of following this diet were encouraging, but it was really too early to make bold claims about their overall effectiveness. A herbalist recently told him that steroids existed naturally in some plants/substances and that this might prove an effective alternative to prescribed steroids. He's following this up right now. One final question, does anyone know if it's better to undertake vigorous exercise or mild exercise for lungs with early-stage sarcoid?
August 24, 1998 - Victoria Hello, I would like to find as much information as possible, or hear personal experiences with Sarcoidosis. My boyfriend is diagnosed with the disease, and is convinced that absolutely nothing will help him. I know that doing nothing may help cure the disease in time, but is there anything that I can keep track of that may help him feel better on days that he is not feeling very well? Are there certain foods/vitamins that he can add to his diet to help him? Any information will help. I am very concerned because it has gotten a lot worse lately. He won't go get a check up or anything to see how the disease is progressing. So I want to learn all I can to help him feel as good as he can. Maybe if I learn more about it, or as much as he does, he will start to listen to me about how to take better care of himself. Thank you.
July 31, 1998 - Anonymous I need to know more about sarcoidosis. My stepchildren's mother has the disease, but refuses to discuss it with me much less anyone else. I am concerned about what the kids and I may expect. She is very bitter from her divorce from my husband and refuses to even accept that he is now remarried to me. She had the disease while she was pregnant with both of my stepchildren. She also had complications from the disease; she needed a catheter put in her chest. Is this disease hereditary? My youngest step daughter is six and is always ill and coughing and tired. She also had to go to the emergency room for coughing up green phlegm last month. Her mother refused to tell us this information regarding my step daughter. The only reason we know of her illnesses is because we get statements from the insurance companies in the mail every few months. My husband says not to worry, but I do every time I get the statements. Does this disease cause mental disabilities too? She takes prozac on a daily basis. She has the disease in her lungs from what I was told and she told me herself that she is deathly ill. Is it possible to die from sarcoidosis? She is legally handicapped, at least she has the car plates and receives disability to prove that. Does it keep you from working? Will it go away? I really need some answers and so does my husband. Please, anyone out there with any information on Sarcoidosis of the lungs please email me ASAP! PLEASE, I need information. Thank You.
July 25, 1998 - Chad My mother has sarcoids and is going to be 85 yrs. old. We think many of her problems relate back to this disease which may be the cause of several illnesses in her life. She's a survivor of lymphoma (5 yrs+ now) but battling with frequent "flu-like" symptoms that are not cancer-related. Docs here don't seem to be able to say much about sarcoids. She says her mother had tubercolosis when she was born, but says that her mother was healed with only scar tissue showing up on her lung. My Mom has suffered with multiple weird conditions; goiter resulting in a thyroidectomy and radiation in 1950 when they probably didn't know that much about radiation treatments, etc. She was born in Spokane, WA but moved to Kellogg, ID when she was 4.5 yrs. old and lived there until 1941 when she moved to Seattle. We have been considering the effects of the lead content in the Kellogg area as a possible cause for her many problems, but now wonder if it wasn't the sarcoids. We are delighted to find this connection and wonder if anyone on this e-mail would like to be in contact with us. We have wonderful docs in Spokane, but have not gone to a pulmonary specialist yet, only internal med and rheumatologist, so will try that next. Good luck to all of you.
July 20, 1998 - Rumy Hello. I am a 23 yrs old (or young, depends on how you see it) female and I am sick since a couple of months now, without anyone knowing what I have. A couple of weeks ago my doctor decided on Crohn's disease, but now, one week ago he called me to do some tests to check on Sarcoidosis. I do not know at all what this is (or at least, I didn't know, I learned a lot through these pages). But the thing I don't understand is that I do not have any problems with my lungs. My problems come from my intestines (having "D" and severe weight loss, and also cramps since January). I would like to hear from someone who has (or who knows a lot about) Sarcoidosis in the intestines, since I only found information on lungs, eyes etc. on these pages. What should I count on? Will I need surgery? I do not think so, since my doctor was already speaking of Prednisone (same treatment as for Crohn's Disease - if you can call it a treatment, it only cures the symptons if I understood things correctly).
July 15, 1998 - Anonymous from Toledo, Oregon I am a 67 year-old female from Oregon diagnosed with Sarcoidosis in 1992 after 2 years and $32000.00 worth of tests and misdiagnoses. I began losing weight and having breathing problems sometime after refinishing the woodwork throughout our home with a verathane stain that only warned to use adequate ventilation (and I had all the windows open). Our son, 39, also has Sarcoid and has annual lung tests. He came down with it while he was working with epoxy resins in a hobby shop. My mother died of tuberculosis at age 34 and as a result I am TB positive and cannot be treated with steroids because it may activate the TB. I am extremely allergic to medications and cannot take many antibiotics including penicillin, which is what they would have to use if my TB became active because of steroids. Sarcoid originally affected my skin to the point of extreme itching and "sarcoid bumps". My lungs are seriously involved and I have had uevitis (eye inflammation) and presently my ears are itching and my hearing has been affected. I have had a "lesion" in my left nostril for years which never heals or goes away--just builds up a crusty scab. I also have had intestinal problems in past years which led to a temporary colostomy prior to 1992. And I was told that I had a "fatty" liver. I wonder if these problems could be the result of sarcoid lesions. I experience numbness in my feet and face and at one time, in my hands. I have moved out of a metropolitan area, where my breathing capacity was at 50%, to a coastal area where my breathing has improved except for the exchange of gases which means my lungs do not disseminate oxygen, etc. properly, as I understand it. I have been unable to get any doctor to get interested in the "toxic agent" theory (plus hereditary predisposition) to investigate same. I have also been told that Sarcoid does not run in families but my son and I have proved that wrong. At present, I am in fairly good health except for spells of extreme tiredness upon exertion, some skin and digestive problems and breathing difficulties. I also have experienced some hair loss especially in my eyebrows, one of which is half-gone. I wouldn't be surprised if even Karen Duffy's Sarcoid was the result of some toxicity because even makeup can cause allergic reactions. Has anyone else experienced the hair loss problem? Would like to exchange information with other Sarcoid patients.
July 3, 1998 - Janie Greetings to all readers. I read a few pages here with amazement. I was diagnosed with sarcoid this week. I have never heard of this ever before. Last September, 1997 I started coughing and it was treated as cold-air-induced asthma by my doctor. In April I got extreme lower back pain. My doctor diagnosed that as pleurisy and gave me muscle relaxers. Later he took an x-ray and diagnosed me with walking pneumonia. After the medication did nothing, I was referred to a pulmonary specialist. He thought I had TB or a bird related virual psittacosis. He immediatly did a CAT scan and blood work. No luck. Next was broncoscopy with no luck. Then a needle biopsy with no luck. Then he wanted a lung biopsy done. I went to Mass General Hospital where they approached the opposite area of the lungs others had biopsied, and found I had sarcoid. Next week I am to start prednisone. I am not looking forward to that stuff, which gives puffy cheeks and weight gain. I'm 43 years old never had any lung problems. My daughter has asthma; she's been on prednisone a few times. On July 14th I am meeting with a doctor at New Medical Center in Boston who specializes in this disease. I want all the info and answers I can get. I am scared. I want this over like all of you. I didn't realize it may be with me for a long time, perhaps forever. But it could be worse for sure. Please feel free to email me, I will respond to all. Thank You and good luck to all.
July 3, 1998 - Nancy Thank God for this web site!! It's unfortunate that there are so many of us who suffer from this mysterious monster of a disease. I'm 36 years old and I have sarcoidosis. Let me say right up front, "Don't Ever Give Up"; I'm glad I didn't. In 1988 I developed very painful nodules on my lower legs that were very warm, red & tender to touch, associated with severe fatigue & arthritic symptoms, especially in my ankles, knees, hands and fingers. I was soon diagnosed with Erythema Nodosum. I was placed on high doses of Prednisone. I also developed bursitis in both hips and shoulders and was given cortisone injections. At this time I was also diagnosed with asthma. I developed chronic sinus infections with debilitating sinus headaches, as well as migraines. I would lose my voice completely for days at a time, sometimes for a few weeks at a time. Laryngitis occurred on a monthly basis and my ENT provider had no explanation why this kept reoccurring, especially since cancer and polyps were ruled out. I was on doses of Prednisone and Augmentin 875 mg twice daily. Many antibiotics didn't seem to help anymore. In January, 1993 I became very ill with high fevers of 106º with a terrible cough, chills and aches & pains. A chest x-ray showed pneumonia. Several antibiotics were tried; none of them helped. Two months later, with not much improvement, I was sent to a pulmonary doctor. A pulmonary bronchoscopy was also done, which showed an obstruction in the lower right lobe of my lung. The biopsies were not very promising. And the CAT scan showed a mass in the lower lobe as well. I was immediately sent on to a thorastic surgeon (a chest specialist/surgeon) who decided that I needed open-lung surgery to remove my lower right lobe. Surgery was not something new to me, this would be my 11th operation, not all sarcoid related, though. I was hospitalized for 10 days. There were a few minor complications, but recovery went very well considering chest tubes and all. The findings from the biopsies finally confirmed that it was (chronic) sarcoidosis - which was in question ever since 1988. Intermittently, I developed Erythema Nodosum - usually this pattern was associated with a sore throat, several episodes of bronchitis, sinus infections, and laryngitis. This continued for several years. My pulmonary function tests remained poor and I was placed on Prednisone, basically to control my asthma and sarcoid. I could hardly walk up the stairs without being totally out of breath. I always knew when my sarcoid was acting up because my asthma worsens, also I would be extremely tired and my joints were so sore and stiff that holding a pencil even hurt. By this time I gained about 40 lbs. In March of 1994 I was hospitalized for 7 days with asthma and sinusitis. My ACE level was sky-rocketing and my PFT's were poor. I was put on more Prednisone and many other drugs along with 3 different kinds of oral inhalers. It seemed not to matter where I worked, I was getting sick from people around me. My weakened immune system just wouldn't cooperate. I decided to take time off from work to see if I could build up my immune system. In 1995 I had endoscopic sinus surgery for a deviated septum, to remove nasal polyps and to drain my sinuses. This surgery gave me many visits to new ENT's due to constant sinus infections. I was told I needed more surgery. Although I couldn't bear these monthly sinus infections I had decided not to have the surgery done because the doctors couldn't guarantee it would take care of the problem. In the summer of 1996 I noticed that my upper abdomen was full of pea size nodules, not noticeable to the eye, but extremely painful to touch. The biopsies were inconclusive but my surgeon believes they are related to sarcoidosis. I am very happy to say that recently I have been feeling better than I have felt in years after taking daily supplements of extracts of fresh raw fruits and vegetables over the past 9 months. I do believe that proper nutrition plays a big part in our overall well-being, it has made a significant difference in my life.