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Christina I am 39 and was diagnosed November 15 1996 with Sarcoidosis after mediastinal surgery to rule out lymphoma. On November 11th, I went to an ER after arriving at work gagging because of extreme breathing difficulties. I assumed it was a very bad asthma attack. Standard treatment not effective- arrhythmia, sensation of something blocking my windpipe. X-rays were not explanatory; lung scan ruled out pulmonary embolism. Lots of blood was drawn. My third doctor wants a CT scan. Referred next to a pulmonary specialist and was admitted to the hospital after an exam with him. Received IVs with Prednisone, Biaxin, Theophylline, I can't remember the rest. Surgery was scheduled for November 15th. Released the next afternoon with lots of perscriptions. Did I mention I have no health insurance and limited resources. Received a certified letter from my pulmonary doctor stating he no longer wanted me as a patient. No explanation. Sought out another one on November 27th. He did not give me any advice other than steroids and Darvocet for the pain. He advised an eye exam since I had pain and visual difficulties. I had x-rays on December 4th and the next appointment on December 9th with a specialist. Nothing new other than sarcoids probably in brain and definitely in muscoskeletal and other organs according to all the blood work. I had to apply for medical/financial assistance from HRS, they took care of my bills for November, no help since then. My doctor did not want to cooperate with the agencies so I could get further assistance and I had to seek another health care provider. I have seen them 4 times (once a month). Prednisone was reduced from 40 mgs to 20 mgs daily. Theo-Dur increased to 600 mgs daily. I am taking Darvocet 100 mg / Advil 400-600 mg daily though it is not very effective as of this writing. Theo-Dur probably helps the most. Have experienced a weight gain of 50 pounds. I was diagnosed with Bell's Palsey and Cushings Syndrome back in January. I also got vaccines for pneumonia and flu. In February, I was told I have hypertension and would develop Diabetes real soon. In March, I had to get a shot of Medrol. On April 9th, I was told I can't be treated anymore because he doesn't know much about this rare disease and I need to see another specialist. I give up. I don't have any money left to pay for perscriptions let alone more doctors/tests. Did I mention I haven't been able to go back to work since that fateful visit to the ER, strange because before this, I worked 40+ hours a week. Now I am lucky if I can walk around in the grocery store for 30 minutes every two weeks. My house is no longer up to my standards. Laundry is piled up, you get my drift. I have learned so much through the library and of course AOL, but I still need a doctor in Florida who has actual experience in treating this and replacing Prednisone with an alternative to reduce my weight and inflammation and lower my blood pressure. It has been explained to me that my experiences with this will end with death. Gee, do you think I am asking for a miracle? Hey, I did apply for SSI, but I have up to four months to wait and find out if they will help me. Thanks for letting me spill my guts. Appreciate hearing from anyone.
April 27, 1997 - Laurie I am 37 and was diagnosed with Sarcoidosis of the lungs in March 1997. This is all new to me. I appreciate all of the information I have found on the internet from people who also have this disease. This is a most frustrating illness. I went to the emergency room with chest pain and shortness of breath. My right side and back also hurt. After a chest x-ray that was compared to one I had three years ago, the E.R. doctor said these look worse and you need to go see a Pulmonary Doctor. My life has not been the same since that day. I had a bronchoscopy/lung bx which determined that I had Sarcoidosis. I was put on 40 mg. of Prednisone for 7 days and then decreased by 5 mg. every 4 days until off. At first, I felt wonderful on that stuff. I could have gone jogging, but as soon as I had to drop down to just 35 mg. things started going downhill. My lymph nodes started to swell. I got the moon face and widows hump. I gained 22 pounds in just 6 weeks because they made me eat like a pig. I am always flush in the face and I feel like I'm on fire although I have no fever. My hands, feet, and ankles have really swelled. I feel totally miserable and the side pain, shortness of breath, and back pain have all returned. Does everyone feel like this with this disease. I'd like others to e-mail me and let me know your experiences with this disease and steroid use.
April 19, 1997 - T. LeHew Hi, my name is Trudy. I am a 49 year old white female. In January 1997, I had a severe attack of arthritis. I was bed ridden for two weeks - my ankles, knees, elbows, and wrists were red and swollen. Moving them was unbearable. I had a cough, but BIG DEAL, that didn't get my attention. After many doctor visits, I was told I had Sarcoidosis. After reading e-mail experiences, I think I have had this for years. I have had night sweats and extreme fatigue for about eight years (off and on) with pain in my eyes. Nothing that I took stopped it. I had watery eyes that started nine years ago, a rapid and irregular heartbeat, and sore joints. I was told I didn't have arthritis. In November 1996, I had a swollen face and often had blurred vision which interfered with my work. After the January 1997 attack, I still feel stiff, fatigued, and my ankles feel like I have sprained them when I walk. My knees don't work right and it hurts to get up and down from a chair (forget getting on the floor and trying to get up alone). I sound like a hypochondriac, huh? My problem is I haven't worked since January. I'm self employed, or was, as a manicurist so I have no disability insurance. Has anyone else been out of work with this problem? If so, what did you do? I would so appreciate your response. I don't know how long this thing takes to run its course. As of yet, I can't even tolerate the chemicals at my job that I inhale.
April 17, 1997 - G. J. Costa
Please tell us more about the millimeter wave therapy. What does it consist of? What are the side effects? Where is it available?
[Editor's Note: Millimeter wave therapy for Sarcoidosis has been tried only in Russia, as far as we know. The Russians have been treating everything from acne to tuberculosis with millimeter wave therapy. In the United States there are several research groups looking at millimeter wave therapy, however, no one has found it useful in treating anything yet. There appears to be a wide difference of opinion between what the Russian scientists think they can accomplish with millimeter wave therapy and what American scientists think it is useful for.]
J. Chamblee Hello, I was diagnosed with sarcoidosis in Dec 96. I spent a week in the hospital getting it under control with steroids. Things went well until three days ago when the chest pain came back 10x worse then before, along with blood being coughed up, shortness of breath; god I feel so bad. Does anyone have any suggestions on pain management? The docs told me today that I have stage three sarcoidosis and raised my dosage of steroids from 40 to 80 and put me on biaxin 500 mg 2x a day. I'm open for any suggestions on how to deal with the pain and sarcoidosis.
April 16, 1997 - A. G. Patodia My father, who is in India, is suffering from Sarcoidosis. I am sending you his medical case history. He is willing to get himself treated anywhere in the world, wherever the best treatment is available. I need help and advice on whom should he consult regarding this matter. Case History of the Medical Problem of my Father: (In his words) My medical problem started, sometime in the first week of May '96, with a low fever between 99 to 100 degrees Fahrenheit. Initially, I took medication for virus, Malaria, etc., but when the fever continued, around 20th of May 96, I showed it to a senior physician in Bombay (India), Dr. Ramamurthy. Along with X-ray and CT scan, blood tests were also done. Dr. Ramamurthy diagnosed my disease as Tuberculosis (TB) and put me on AKT-4 treatment, which I took for almost 5 to 6 weeks but the fever persisted. Then I decided to take a second opinion, and consulted another senior physician Dr. Farukh Udwadia. I once again got my CT scan, chest X-ray and other blood reports done. Dr Udwadia, on seeing all these reports, diagnosed it as Sarcoidosis. At that time the blood report of Angiotension Con Enzyme showed 75. At this point I was advised to stop the treatment of TB and Dr. Udwadia put me on the following medicines: (1.) Isonex 300 mgs per day. (2.) Prednisolone 30 mgs per day for three weeks, then 25 mgs for next three weeks, 15 mgs for then next three weeks, and 10 mgs for next 4 weeks. The above medication was started by me around the 25th of June '96 and continued until the end of October. In the month of September '96, a fresh CT scan, blood test, etc. were taken, these reports showed some improvement. But during the month of October '96 I started having problems with the vision of my left eye. I got my eye tested by a reputed eye surgeon in Bombay (India). On his advice an eye engiography was done. He analyzed the problem as Central Serous Retinopathy and according to my eye surgeon, the cause, in all probability, was Prednisone. He advised me to consult my physician and then stop taking this medication immediately. On consulting my physician, he asked me to lower my cortisone intake from 10 mm to 5 mm and then completely stop it by November '96. After stopping the Prednisone, the vision of my left eye which had increased from 6/6 to 6/12, improved slightly to 6/9 and it remained at that. As a follow up, again in February '97 I got my Angiotension Con Enzyme, it showed a sharp increase to 110. Hence, I was again advised to get my chest X-ray and CT scan done, both of which showed that Sarcoidosis had spread and there were multiple enlarged lymph nodes in the mediastinum, measuring around 1.3 cms. Central Necrosis was not found, but large bilateral hilar lymphadenopathy is there. Numerous small nodules are present predominantly in the peribronchovascular and subpleural distribution. The pleural spaces are clear and no abnormality is detected in the thoracic cage. My other blood reports are almost normal, including the ESR. On the basis of this report, my physician advised me to restart Prednisone of 10 mm, as a maintenance course, which I started taking from March '97. Now since starting Prednisone, I feel that my vision is again getting affected. My physician says I need a larger dose of Prednisone to control my Sarcoidosis, but as per my eye surgeon, if a higher dose of Prednisone is taken, my vision can be severely affected. I have decided to take the advice of a third doctor, to find a correct solution to this health problem. I am willing to get myself treated anywhere in the world, wherever the best treatment is available.
April 15, 1997 - J. J. What I'd like to know is how one contracts Sarcoidosis? My wife has recently been diagnosed with Sarcoid and I'd like to know if this is contagious, how do you contract it, is it curable? It sounds like little is known about this illness amongst those in the medical field. Any help is appreciated.
April 14, 1997 - K. White I am a 25 year old African-American female who was diagnosed in January of this year after experiencing severe pain and near blindness in my left eye. I relocated to Washington, DC from Chicago in August, 1996 but I will be returning home because I am in DC alone and I don't have a support system. Up until four weeks ago I elected to undergo steroid shots in the eye. I have had two treatments but the pain is unbearable. I have tried prednisone but the side effects were so bad that I had to be rushed to the hospital because it felt like my face and neck had been set on fire. Now, I'm not under a doctor's care because they make me feel like some sort of a science project. If anyone knows of a specialist in Chicago please email me. I know my comments sound like they're from someone who is a basket case but I'm just so frustrated. I'm glad to know there is a place I can vent to people who understand and I don't feel so alone. If there is anyone who would like to correspond with me please do so. God bless you all.
April 11, 1997 - K. Davi Thank you for this site! I knew practically nothing about Sarcoid until yesterday. I was diagnosed in August, 95 after suffering from fatigue, weight loss -- generally feeling miserable. It took 10 days in the hospital, but the doctors got it only after a gallium scan and a broncoscopy. I was not terribly concerned; it's not life threatening, many people do not even require treatment. So I did not research it further and did not change my lifestyle. Well, it is back and I am on prednisone again, 60 mg. My first experience with steroids lasted 1 yr with only weight gain and sleeplessness as side effects. As many are, I am equally concerned with the effects of the medication. From what I have read over the last day and a half, the relapses seem to be more severe and have more symptoms. As you might guess, I would urgently like to learn this is not always the case. I consider myself lucky at the moment, but I have serious regrets about not knowing more and taking better care of myself originally. My case is in my lungs and I also have minor joint pain. I have passed several stones over the last 6 months. My current reaction to the steriods are hunger/weight, chest pain (perhaps a result of the fibrosis healing) and mild leg cramps. For people looking for basic possible cause/source information, my information should be of little help. I am 29, White Male, I lived in rural towns all my life 10 yrs NY, 20 yrs FL I have never worked in an environment other than restaurant and office. I had the typical innoculations as a kid and have never been given blood or had any unusual trauma. I have, however smoked for more than 15 years. I guess I have a lot of research to do. Please keep this site going. It is very helpful. If anyone has any tips, comments, suggestions - anything please E-Mail
K. Everett I am now 19 years old. My problems started when I was about 14. One night after playing basketball in the day I woke up with a swollen thumb. I had no idea how I got this, but I was in dramatic pain. I first went to a hand doctor, who had no idea what it was, and placed my entire hand in a cast, and subjected me to several different tests. All were negative. At that time I began to tear constantly; so I went to an eye doctor, who again, gave me several different treatments that did not work. However, the doctor noticed that the bridge of my nose was increasing in size, and figured that this may be the problem. The doctor then sent me to an ear, nose, and throat specialist, who finally diagnosed me with sarcoidosis. The doctor then sent me to a chest doctor for a check up. He then started me on prednizone, because my nasal inflammation was getting worse. In fact at that time it was very noticable. Over this period of moving from doctor to doctor, I hit my ring finger with a basketball and endured pain and swelling again, and again, it only went down slightly. I was slowly building a link between hitting my fingers and gaining a swelling that would not go away. I then hit another finger while playing handball, figuring that it was a little less severe than a basketball, which not only became swollen but twisted slightly. You can only imagine how difficult school was for me. While playing karate with a friend, I hit my right swollen ring finger again. This time it became twisted and swollen worse. I cried that night in pain. Now I had two twisted ring fingers and one swollen thumb which remain that way today. No one sees my fingers. I hide them from the public. I endured much pain in Junior HS, so during HS I taught myself different ways to keep them out of sight. I think the lord made it possible. Over that period as well, I hit my head on the refrigerator resulting in a large noticeable swollen forehead a few days later. Today it is noticeable that I have a big forehead, however, it blends with my face well. No one ever asks about it anymore. Today I breathe through my mouth for a significant part of my day, because my nose is blocked at certain times. Medication helps but never cures. I still tear constantly. The eye docs wanted to place tubes in my nose to stop this, but I say why go around the problem, which is the nose itself. I am scared to ask certain questions of my chest doctor because there are certain answers that I do not want to hear. I do get frustrated with everything every once in a while, however, I try not to let it get to me. I have not allowed this disease to rule my life completely. I am still happy. As for my fingers, I play very good country music on my guitars. I just hope that some day the lord will enable me to express my feelings with my hands only, and allow me to sing and hum all the time. Never give up hope folks. Ask the lord for help and he will guide you. It worked for me. Please feel free to send your comments/suggestions.
April 11, 1997 - D. Mills I am a 33 year-old white male, and about a year ago I was diagnosed with sarcoidosis. I first noticed a problem when the backside of both of my ankles started hurting - as if I had injured them somehow in exercising. The doctor first diagnosed me with tendonitis, cautioned me to always stretch before exercising, and gave me some "pain relief" pills. A few days later, both of my ankles and feet swelled and turned red, and I had a fever of 102 degrees. All this time I also had a slight cough, but since I am prone to get sinus infections, allergies, etc., no one thought that my ankles/feet situation was related to my cough. Finally, after my local doctor could not make a diagnosis, I was sent to a Rheumatologist who, after examining some chest x-rays, diagnosed me with sarcoidosis. To confirm his diagnosis, I was given a bronchoscopy (no granulomas found) and several blood tests - which ruled out cancer, TB, fungus, and other things. With some prednisone treatments (not heavy doses), my ankles soon returned to normal. My cough and fever lingered, however, for a couple of months. In fact, during this time, my cough was quite "violent" on occasion. I haven't had any symptoms in the last 7-8 months or so. In me, the disease seemed to be short-lived. My question is this: Does sarcoidosis sometimes go "dormant" or seem to disappear for periods of time, and then return? When it goes away, does it stay away (typically)? I realize that my case is relatively minor compared to most I've read about here on this page, but still I'm curious. Thanks for any help anyone can provide.
April 8, 1997 - L. Guynup I am still looking to see if any of you out there with sarcoid have had any eye problems such as Pterygiums. My husband had surgery on his eye four times in the last year. These pterygiums started when the sarcoid arrived in his lungs. My story was listed March 27, 1997.
April 7, 1997 - P. Cox I am a caucasian 39 year old female who has had sarcoidosis for 10 years. I have had 3 major exacerbations of the disease with a multitude of lesions over my entire body excluding my face. I am having a reoccurrence at the present time. I suffer from extreme joint pain, swelling, lesions, extremely low white blood cell counts, enlarged lymph nodes in my lungs and on my face, enlarged & tender spleen, and enlarged liver. I, too, like many of you who have written to Information Ventures, have been on Prednisone; however, I found the side effects of the drug to be worse than the disease itself. I have successfully taken Methotrexate before and have started therapy once again with low doses and no side effects. It really does work for me. I have decided that I am determined that this disease will not do me in - I simply won't let it. It is very frustrating at times because most of the time you really don't look that bad so people think you are just fine. Difficult for your family to understand at times. I would love to visit with someone else so please e-mail me.
April 7, 1997 - W. A. Pinnock I am grateful to have received your site, it is very comforting to hear of other people with the same disease. I was diagnosed in December 1996, after losing weight drastically, complaining of severe headache, complaining of pain in my eyes, etc. To date, even though I have been diagnosed with sarcoidosis, I am considered asymptomatic, the doctors cannot find any granulomas in my system, but I am having all of the side effects: more weight lost, terrible headaches, joint pain, severe abdominal pain, mood swing, eye infection, shortness of breath, chest pain, night fever, fatigue. You name it, I have had it. In the meantime, I have become a guinea pig. I am constantly tested, injected, scanned, biopsed, etc. I have joined a support group at the Greater Southeast Hospital in Washington, DC. They are wonderful and they provide numerous amounts of information. That is how I obtained your address. If anyone living in the Washington Metropolitan Area is interested in joining the group or just speaking with someone else about sarcoidosis, please e-mail me, I do not know much, but I can refer you to someone at the hospital. Thank you for listening and please continue to keep this mode of communication open, it really helps.
April 6, 1997 - M. Koutz Thank you for this valuable place of information. I am 45 years old and have been struggling to get back to the happy, healthy, man I used to be for the last 5 years. It is amazing how similar many of your letters are to my life struggles with this pest of a diagnosis. I'm comforted just reading. I've had biopsies taken, been administered predisone, and been given the very familiar line "We don't know what it is..... you'll just have to live with it...." by my doctor. I'm thankful that I found this place on the web. It helps.
April 4, 1997 - M. Halseth I am a 36 year old white female from Norway in Europe. However, this is not about me, but about a very good friend of mine. She is 39 years old and her doctor has diagnosed her with sarcoidosis. Before I start with her story, I must tell you that my English is not good at all. However, I will try hard to get all of you to understand me. My friend did not get the diagnosis because of lung problems. She got it when her doctor removed red nodules on her face that she had for almost a year without growing. Now she has a new one near her nose. She also gets blisters in her mouth. She is always feeling tired. They have taken X-rays of her lung, but they were fine. Have any of you got it like this and get it in the lung (liver, kidney, heart, etc.) later? Or is this a milder form of this disease? Please e-mail me, all of you who want to. If there is anybody who can write in Norwegian, please do so. It is not for me, because I read English pretty well (it is my writing that gives me trouble). But my friend is not so good in reading English, and I will of course translate everything for her. If anybody knows of people in Norway who have sarcoidosis, please give them my e-mail address. Thank you for listening, and thanks for a good site!
April 4, 1997 - G. Cody Is anyone doing work on the kidney problems associated with sarcoid?
April 1, 1997 - K. Anderson I am a 32 year old white female. I live in Magnolia, Texas. I was born and raised within a 30 mile radius of Magnolia. I was diagnosed with Sarcoid in Nov 95. My family practitioner found this by "accident". I had to have a chest X-ray for possible pneumonia (which it was not). Instead, they found that the lymph nodes in my chest were all enlarged. Two weeks later, I was having a biopsy since the doctors thought I might have Hodgkins disease or lymph node cancer. That was negative, therefore, a TB test was done and then numerous fungus tests were done. About 6 weeks after my surgery is when I was told I had Sarcoidosis. My doctor told me that he knew very little about this disease and that I should check out any medical journals I could and do some research. I had another X-ray last August and it shows that my Sarcoid is in remission. However, I do have a "chronic" cough, allergies, and a hiatal hernia. I am not sure if I should locate a specialist to verify this remission or what. My next concern is that my Mother (age 54) was recently diagnosed with Sarcoid (enlarged lymph nodes in the chest). Her doctor has indicated that hers is active and that one of her lungs is only functioning at 80%. She also has allergies and a hiatal hernia. First of all - has anyone heard of the possiblity of Sarcoid being hereditary? Neither her doctor nor mine has an answer for this question. My father's heart doctor indicated that he understood Sarcoid to be found in the "Piney Woods" region? What it comes down to is that neither one of our doctors has been able to give us much assistance in "researching" this disease. If we are in the early stages of Sarcoid, are there any treatments that can be looked at to prevent advancement of this disease? If anyone has basic information for me or has answers to my questions, please e-mail me at the above address. Thank you in advance for your attention and the use of this comment board.
March 29, 1997 - C. Pike I am a 35 year old female who also suffers from sarcoidosis. For those of you seeking information for yourself and loved ones, I have found 2 non-profit organizations that have been most helpful. They are the National Sarcoidosis Research Center, P.O. Box 1593, Piscataway, NJ 08855-1593, (206)845-3108 (this organization also has a web site which you can access) and the Sarcoidosis Research Institute, 3475 Central Avenue, Memphis, TN 38111, (901) 327-5454. Both of these Foundations were started by fellow sufferers of Sarcoidosis. They can give you literature complete with lists of physicians who specialize in Sarcoid. I had success with one of these physicians networking with me and my primary physician here in Flagstaff, Arizona. He was able to help recommend a course of treatment that has seemed to help. Don't give up. It took me almost 2 years and 7 surgeries (including open heart biopsies) to receive a diagnosis. Even the Mayo Clinic in Scottsdale had given up diagnosing me. I am very fortunate to have found and internist in our little city who refused to give up. She kept going until we had a definitive diagnosis and a treatment plan. I am now able to work 30 hours a week and have enough energy to raise my 2 small children. I am on 30 mg/day of prednisone and 3 different heart medications since the disease has caused my heart to enlarge and I have an irregular heart beat at times. I feel that with the current treatment, I have good quality of life and am glad that I can function. Keep searching until you find believable answers.
March 27, 1997 - L. Guynup I do like this page. I have been searching for any information on this subject. I was married last year to a wonderful man. I'm 32 and thought that it would never happen. We were married within months of meeting. Took a vacation out West and decided to elope in Montanna. Just one week before we had left for vacation he had a check up at work. These occur every year. When we returned from our trip, the bad news was upon us. He was told he had sarcoid. I had begun to notice breathing problems even when he did simple things. The treatment began. Steriods are in there 2 months, lungs not getting better. At the same time, he had a growth in his eye. It is called a ptyrigium. Bob has undergone four surgeries to get rid of it, his last one was a month ago. It is back. Although they say that there is no relation to sarcoid, they both arrived at the same time. Bob works at a company, factory I should say, here on the East coast. He has been with them for almost 10 years. I cannot help but feel that this is work related. In the past few years, laws and regulations have been passed to make these places safer to work for employees. My question is what could he and others have been exposed to before the regulations changed. We are trying to find out whether others in his company have this disease. It has been very hard to find out what goes on in these plants as far as medical problems of emplyees go. If anyone can give us any information on this please email us at the above address. Why is it that the East coast has so many cases? Are we not the industrial coast?
March 22, 1997 - Anne Grenier-Taylor I am the founder of the Sarcoidosis Worldwide Support Group d/b/a THE SARCOID BYTE newsletter. We also run the Sarcoidosis Support Group on AOL and run 3 private room chats per week. (Webmaster's Note: the website is no longer available.) We currently have members in 5 countries and supply our members and subscribing physicians with up-to-the minute research in understandable language.
March 22, 1997 - Andrea My mother-in-law, age 58 and of Greek heritage (Sparta), recently "celebrated" her one anniversary in the hospital. She has been sick as long as I have known her, and they tell her that she has advanced sarcoidosis. She has been on and off the ventilator. She has been treated with the standard high doses of prednisone. She has had near renal failure, lung failure, flash pulmonary edema, developed vancomycin resistant enterococcus, nucardia and mrsa. This was a beautiful, black haired greek beauty - who now looks like jabba the hut. She has had two hip replacements and many pathological fractures from the high dose steroids that has led to bone wasting. It is so frustrating to see them just treating "symptons" and not the whole picture. I fear that she'll die soon, in large part, to the sub standard medical care I think she has received. I've found so much information on the net that has NEVER been told to her (melatonin, etc.). Does anyone out there know of anyone in the Boston area who really specializes in the cutting edge, long term care of patients with extensive sarcoidosis? At this point we are willing to listen to any therapy that will help us help her to get her strength back, go home and be with her family.
March 21, 1997 - John I am 62 year old white male who was diagnosed with Sarcoidosis at age 55. I am on 5 mg of Prednisone and generally feeling well, although I am at half lung capacity on a PF test. With a scientific background, but no medical training, I have a hypothesis on the "cause" that I feel explains the diverse population groups that get, and don't get, Sarcoidosis. Please let me know of any interest.
March 19, 1997 - Alvie Newman Hi, my name is Leonne and I'm a Canadian white female who has the misfortune of being part of your group (officially). Having just been diagnosed with Sarcoidosis, my need for information is great. Within a two week period I went from a healthy lifestyle of walking 12 km to work, playing squash, swimming, dancing, you get the drift, to walking with crutches and coughing like an old man. At this time I'm not on any medication, and my eyes are still normal. Any information would be great.
March 19, 1997 - A. G. Patodia My father is in India and is suffering from sarcoidosis. It has been detected on a clinical basis only. He was advised to take a course of steroids, which he did. But, in the mean time, his vision in one eye got affected and he cannot see, almost 50% from one eye. He was advised to stop the steriods. I think that it has become too complicated for the doctors in India to handle his case. He is willing to get treatment in the United States or any other country where he can get the best treatment. I would appreciate it if you can suggest places where I can get him treated.
March 19, 1997 - M. Winrow I am a 37 year old male. I was diagnosed with sarcoid in Sept 1989. My symptoms had the Doctor thinking lymphoma. It took a week of in-hospital testing before they were sure it was sarcoid. My major sypmtoms were fatigue, nausia, swollen glands (under arms), enlarged spleen, hypercalcemia and elevated ACE levels. I don't think there is much lung involvment but it was the broncoscopy that verified the final diagnosis. I have been on prednisone ever since. I started on 30 mg/day and tapered down, and up and down, over the years. I am currently on 10 mg. I have found during other taper off attempts that 7 mg is my low threshold. Anything below that, I can feel my spleen swell up and the blood tests will show elevated calcium and ACE levels. As a kid, I had hay-fever type allergies. When I was 9 or 10, I had a series of allergy treatment shots. I have heard that there are theories that these type of treatments may mess up the autoimmune system. I also have smoked a lot of pot through the years and I beleive that has had an influence in the disease. Around the same time I was diagnosed, I also started developing asthma. I have occasional bouts of depression. If I watch my diet (The Zone - Dr Barry Sears) and exercise regularly, I feel pretty good. Tommorow, I see another doctor, hopefully one with some fresh ideas.
March 14, 1997 - Tim My name is Tim. I'm 36 years old and of polish descent. Two years ago, I found out I had "sarcoid". I'm a non smoker who had an annoying cough for years. I got extremely sick in a period of one day. Like all of you, I had night sweats, tired, way bad joint pain and red eyes that put fear in people. Two other people at work found they had sarcoidosis within 1 month of me. I'm not on any medication but I still know I have it. One interesting point is that all three of us also have a skin condition (psoriasis). Does anyone know if there is a connection? I am grateful that it is not worse and I fear a day where I may turn back into Mr. fever. Thank you.
March 12, 1997 - D. Bodnarchuk Now 38, my journey with Sarcoid began as an inflammation of the sinus cavities around 3 years ago...stuffiness, inability to breathe through the nose, etc. My colleagues and family would continually ask if I had a cold. After numerous unsolicited suggestions that it was caused by allergies, I finally went to the family doctor, who also insisted the redness and stuffiness was due to allergies. The allergy specialist was somewhat confounded also, considering I tested negative for nearly 40 allergy-causing componds. At this point I was refered to an ear, nose, throat specialist who finally determined, after much poking, that this might require surgery. Sure enough, that did clear the passage ways to a greater degree than before and I was again able to breathe with relative ease. Problem fixed for the most part, so I thought. A year later I began the oh-so-well-known cough. I had orginally attributed this hacking to the wood dust in my workshop, however, my occupation in the rock drilling industry was just as suspect. But my last round with doctors and surgical tools had decisively curtailed my next (though very necessary) medical visit. It wasn't until I was required to have a routine medical exam and chest x-ray when hired on by a new company that I was aware that something about this cough was unusual. The next stop was to the thorasic specialist. This time, I was really concerned; my health, new job (or maybe no job) were all at stake. In some twisted way, that first look at my chest x-ray reminded me of some galactic picture out of Star Trek...streaks of light radiating from a massive, glowing nebula surrounded by darkness. It might have made a pretty picture... had it not been growing inside me. That was in September 1996. In the interim, I have received 1 catscan, 1 radioactive isotope scan, 8 chest x-rays and now sport 3 little scars from the biopsy. Prednisone (30 gm at 6 am every day) has been the course of medication since December. The good news is that I haven't felt this 'healthy' in quite some time. The coughing has stopped and my sinus condition, though not perfect, has unexpectedly improved as well. Then there are the not-so-noble side effects of Prednisone-induced sleepless nights (this 2 am commentary, for example), occassional fatigue, watering eyes, shakiness and the odd blister around the nostrils. But heh, looking pretty is way down on the list these days. I'm just grateful to be here!
March 10, 1997 - D. Hatcher Thanks for this site. For a while I thought I was the only one feeling like this. I am a 46-year-old white male living in Northwest Georgia, home of a lot of pine trees (ring a bell?). I was diagnosed by bronchoscopy in April 1994. My problem was I developed a chronic cough in late 1989 following a bout of walking pneumonia and I have coughed my head off ever since. I went through six doctors, some of them pretty strange. I am an on air newsman for a large Atlanta television station and one had other patients come "see who is in my examination room!". An Ear Nose Throat doctor, without entering the room diagnosed me with allergies from the doorway. I had already completed the full spectrum of tests a month earlier elsewhere. Anyway it wasn't until I found my Pulminary doctor that I found out the bad news: sarcoidosis. Only, I had never heard of this stuff. I took prednisone for about two years and ended up with cronic migraine headaches to go along with the cough. Now I have a Neurologist too! It is so frustrating to be talking to someone on the phone, trying to gather information for a story, and have to rudely put the phone down for several minutes to recover from coughing. Sometimes I even come near to blacking out. Spicy foods are the worst. I have discovered that heavily spiced food, such as Italian or Mexican, can trigger a coughing spell that will send me running from the resturant while people who "recognize" the newsman watch in horror. Needless to say, I can no longer anchor a newscast for fear of coughing during a program. My doctor says the prednisone burned out the sarcoidosis, but Tussinex cough syrup with Codeine is the only thing that controls the tickle which eventually triggers a coughing spell. Now I take that and Firotal with Codeine for the headaches. Zoloft helps cut down the headache pain on a daily basis. My pharmacist friend, I am his friend now after all the medicine I have bought from him has helped him buy a new car, says he has heard something about melatonin. Has anyone else heard this could help? Melatonin is a non controled substance that can be bought over the counter, but other than that, I have no idea what affect it might have on the sarcoidosis or the resultant migraines. Thanks for reading this, my thoughts and prayers are with you all because I do know the frustrations you are going through. Keep your chins up we will beat this thing together. E-mail me if there is something I can do -- especially through the media.