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June 22, 1998 - Brett I was diagnosed with sarcoidosis of the liver 12 months ago. My lungs are clear, however I have severe pain in the thoracic area. I have had every test imaginable and they are unable to find the cause of the pain which I have had for two years. Any suggestions etc?
June 10, 1998 - Phil Hi. I was diagnosed about year and a half ago. I have no obvious symptoms but do have extensive lung involvment. The doctors and the surgeon commented that for what the x-rays and tests show (lots) I am remarkably healthy. Just figures with this strange but scary disease. I understand how everyone feels and sometimes I feel like I have a timebomb inside of me waiting to go off. I thank everyday that I feel well.
May 26, 1998 - Dan I have known since 1984 about my condition and until now has not been much of a problem. A year ago I found out my brother has it also; he is 1 year older than me. I've talked to doctors about the oddity of two people from the same family having this rare disease. Now we are both having the same complications; coughing, fatigue, muscle soreness, x-rays that show lung damage etc. We would like to go beyond what others have already tried and search for treatments from herbal or scientific fields. Have heard a little about a treatment of waves of some sort used on TB patients to help lung damage. My brother is 57 and I am 56. Can you help or give me some other info on how I can find some help? Thank you very much.
May 21, 1998 - Amy I was diagnosed with sarcoid two years ago by a doctor who noticed that I had been returning quite frequently for the same symptoms: colds, infections, and bronchitis. I was a smoker, but as of the 24th of this month, it has been a year since I quit, and I still don't feel well. In September 1995, I went in for my first biopsy that was unsuccessful. I was then scheduled for a major biopsy in December 1995. The disease had advanced so far that the upper lobe of my right lung was removed, and because of the advanced state of the disease, I ended up with a hole in my lung that did not heal. I had chest tubes, and steroid treatment that did not work, and was taken off without being told of the severe side effects. I was in the hospital for 21 days, two days before Christmas 1995, they did the second surgery and opened up my back to look for a hole they never did find, not even after 2 hours. The surgeon rubbed my lung with gauze to make my lung swell and reattach to my chest cavity, it worked, and boy, do I have the scars to prove it. This disease has caused the end of a relationship because it is so misunderstood. And even though doctors say it "BURNS ITSELF OUT" they don't have a clue. Only a person with sarcoid can explain what it is like to have this disease, and not be able to walk across a parking lot, or hold a child, or walk a dog, or carry groceries. I have been out of work since last September, and the Social Security Administration does not recognise this as a disease that prevents people from working. My sarcoid has not gone away, and my doctor has suggested a lung transplant because of the damage to my lung. Because of all that has occured, and the steroid treatment, and the x-rays of lungs that look like sponges with holes in them, I was prayed-for for healing at my church, because the Lord is the most Powerful Healer, and I have nothing to lose. If anything, it gave me a super attitude to inform and fight for my health. I may have this forever, but I will not let it beat me. The pain is always there, my lungs are aways scarring, and I can only hope that my horror story helps someone. Still today my Pulmonary doctor acts like it will just go away, but it hasn't, and probably never will. Most doctors have never even heard about it; isn't that a shame? Please, keep informing, keep the faith, we people with this disease have to get the public aware of the damage it causes, just the steroids alone. Chronic fatigue syndrome gets more attention than Sarcoid. God Bless all of you who have written. I know I have rambled but I just want people to know you are never alone, never give up, even when your lungs, or what ever area you have this in, has to. Please write. Amy
May 16, 1998 - C.L.C. I was finally diagnosed with Sarcoidosis May 14, 1998 after having many years of "weird" illnesses. The doctors treated the symptoms and until I saw a Pulmonary specialist, no one has been able to figure all of this out. A biopsy of a lymph node in the mediastimum confirmed his suspicions. The pain in my chest has been unbearable which made the doctors think it was heart problems at first. I have previously been diagnosed with menengitis, encephalitis and Bell's Palsy. All of these things have symptoms which led to the conclusion of Sarcoidosis. My doctor said that this disease can affect your brain, lungs, eyes, heart, kidneys and liver. He is very knowledgeable about this disease which I am so very grateful. He stated that no one should take the steriod treatment unless you are having problems with one of the areas I mentioned above. Pain management is the key. The last two days my doctor changed my pain medication from a narcotic (addictive) to one that has made me feel like myself again. It is called umtain. I have been out of work for approximatly 5 weeks and have been very fatigued. I even went swimming with my daughter today. I hope this can help someone. Good luck with all of your battles. Think positive!
May 14, 1998 - Maribeth Well, I was just diagnosed with Sarcoidosis after a six month battle with doctors and respiratory problems. I finally got a chest x-ray, and there it was, a bunch of powder puffs behind my lungs, Bilateral Hilar Adenopathy. I have had a lung/lymph biopsy. The good point is that my lungs are not involved. The bad news is that I live in such a small area that no one knows much about Sarcoidosis. I have so many questions. I want to know why I can't walk down a hall without losing my breath even though I don't have lung involvement. I want to know when the pain will go away from my joints, and the pitting edema will go away. I want to know if it does go away, will it come back and how will I know? Do I have to become a hypochondriac everytime I cough? I am 33y/o and a mother of two young boys that don't understand why I can't even open a pill bottle. Are there other options than steriods? I already have a weight problem that I am trying to control, and I would rather not have to deal with Steriod side effects. I know this is rambling, but I have been on the net for 5 hours today and have not gotten any answers yet. If there is anyone that could help, I would appreciate it immensely. Am I the only one who is paranoid of this 'mystery disease'? I know I can't be, but I feel so isolated with this, and have nowhere to turn in a small, one-horse town. Thank you for letting me ramble.
May 13, 1998 - Jackye I have a friend who has been having respiratory problems for about a year and a half. She is in the hospital now and has just undergone a biopsy of her lungs. I heard the word Sarcoid mentioned and really am ignorant of the subject. Her lungs fill with fluid. She coughs a lot and they said they removed some type of nodules from her lungs. Can you offer any information?
May 13, 1998 - C. Mabry
I would like to know where this treatment (millimeter wave therapy) can be obtained in the New York Area. Most of the treatments that people receive here are strictly steriods. Any information on this matter would be greatly appreciated.
[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.]
May 8, 1998 - L. Chin I would like to send this caution to anyone using prednisone eye drops. I have sarcoidosis which has affected my eyes in the form of iritis. For 5 years, I have been using eyedrops containing prednisolone acetate successfully to keep the iritis under control. However, I am developing a cataract in my left eye. As I am still relatively young (44), my opthalmologist believes that the eyedrops have caused it. I am "between a rock and a hard place," according to him. Without the drops, I get flare-ups of the iritis. However, I have not had any flare-ups in 2 years, so we will gradually decrease them and see what happens. I will also try a nutritional protocol for the cataract. It seems that this "rock and a hard place" situation is common with sarcoidosis. It seems to have many causes and many solutions. I have hope that diet and nutrition may play a considerable role in the sarcoidosis puzzle. It helped me before, and I'm going to try again. Recently, I have nearly eliminated milk and anything with milk or whey in it from my diet (exception: aged cheese) and have also nearly eliminated a chronic wheeze. Sarcoid related? Possibly not, but if I can reduce stresses on my system in the form of food sensitivities, I hope that I will be in better shape to recover from the sarcoid. I also suspect that there may be a relationship between certain foods and environmental factors and sarcoidosis.