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March 20, 2001 - Don I have had a dry cough and a tough time breathing over the last three months. Also had the same symptoms for a few months two years ago. Lung specialist has determined that it is probably sarcoid, but wants to get the cough down enough to treat it. CT scan has revealed nodules and inflamed lymph nodes in lung area and inside chest. Looking back nearly 17 years, have had bronchitis and other conditions which have weakened lungs and now lungs are worse than ever. Something as simple as laughing can turn into a coughing fit and send my head spinning. Lung specialist put me on 60 mg of prednisone two weeks ago, which will continue for at least another week. Side effects are awful; constantly tired and dizzy. Often leave work so I can go home and lie down -- fortunately, schedule is flexible. I'm now worried that if this is sarcoid, it may be linked to other problems I've had over the last few years, such as back and neck pain. Lung specialist recently told me that I "either have sarcoid or lymphoma," and he thinks it's sarcoid. Hope to find out more at the next appointment.
March 19, 2001 - Joyce I was wondering if anyone had pain associated with sarcoidosis. I started hurting under my shoulder blade about the time I reduced my steroids from 15mg to 10mg. Can someone help me?
March 14, 2001 - Linda I will be going in shortly for a medianstynoscopy, can anyone tell me about the procedure? Is it painfull, were you awake? I would appreciate any information.
March 13, 2001 - Norman I would like to know if anyone has had any success being treated with melatonin (for sarcoidosis). I am a 38 year old white male. I believe that I have had sarcoidosis for 13 years now and for the most part have not been treated. I am growing tired of this disease and am looking for any possible alternative treatments. Now I have "extensive" fibrosis according to a recent CAT scan. Also, my spleen is enlarged and it has affected my left eye leaving me seeing floaters every day. Does ANYONE have any helpful suggestions???? I just read that avoiding wheat might help. I happen to take wheatgrass juice now- maybe I should stop? I just don't know anymore. Any helpful comments would be appreciated. Thanks !!!
March 01, 2001 - Peter (fabergmbh@t-online.de) I am member of the board of the EPOS (European Association of Patients of Sarcoidosis), Amsterdam. I live in Stuttgart, Germany. We have about 7000 members, all with sarcoidosis. We are searching for contact to other patients organisations all over the world to find the origin of sarcoidosis and finally something else like prednisone.
February 25, 2001 - Lisa I last wrote on January 14th. I had an MRI of my neck and back and it is believed that I have never had full remission of lung and chest lymph node sarcoidosis. Likewise, an abnormal signal was found in the thoracic spine (middle spine) showing abnormality of my bone marrow. It is believed to be sarcoidosis and I see a hematologist March 1st. This recent finding is highly upsetting since I've complained of chronic pain and fatigue since 1997. All these pains have been chaulked up to my fibromyalgia and chronic fatigue diagnoses. I have only found bone sarcoid in hands and feet in my research. I also found bone marrow non-malignant tumors, however sarcoid wasn't mentioned. Please respond if there is any known cases of bone marrow sarcoidosis. I will undoubtedly begin prednisone for the first time and am highly disturbed by my 3 1/2 years of udetected sarcoid. Please respond with any bone marrow info.
February 19, 2001 - Denise
I was wondering where this millimeter wave procedure was available? Thank you.
Reply from Webmaster: As far as I know, the procedure is mostly done in Russia.
February 15, 2001 - AK Pandey (India) I have been diagnosed to be having Sarcocoisis. So far I have bilateral hilar lympadinopathy. No other major symptoms exist. I stay in Shimla India and my mother had succumbed to this disease. I would be greatful for any information on the subject.
February 14, 2001 - Melody I am very glad that we are talking about this disease called Sarcoidosis. Well, I have a not so good of a story to tell. My mother H. (age 63), died on August 17, 2000. She was diagnosed with Sarcoid in 1999 and had lost over 60 pounds of weight. The doctors had put her on predisone, knowing she was a diabetic using insulin and taking high blood pressure medication. The week before she died she was experiencing severe pain in her hips and we rushed her to the hospital and they did not even do an exam on her hip. The doctors just stated that it could be an infection or kidney pain; she should take her medication; if she still experienced pain, we need to bring her back to the hospital. Well, my mother died two days later, you see my mother had begged the doctor to take her off the predisone because it had caused her to gain 60 pounds in 3 months and that she constantly had kidney infections, chest pain, and she was very tired. We had admitted her to the hospital twice because of chest pain from taking several medications including predisone. We had an autophy done on my mother and the doctor stated that my mother died of heart failure because she was overweight and a diabetic. However, all of this was under control until my mother started taking Predisone. I beg of you, if you have any answers, please do your research on predisone and sarcoid especially, if you are on other medications. I lost my Mother, Mentor, and my Best Friend. I wish I knew that the doctors were not monitoring her medication, I wished I made them give her an x-ray two nights before she died but, I didn't and now she is gone. Remember, 6% of the people who have Sarcoid do die. I pray that we find a cure for this disease soon. I am now looking into a lawyer to resolve the issues my family has with the doctors. I will be praying that each of you are healed.
February 12, 2001 - Michelle In July of 2000 I had my yearly physical which included a chest X-ray. Well the office never told me that there were Hilar Nodes found. When I went to the doctor (February 2001) for an impacted sinus, the doctor asked why I never had a chest CT done? My question was "Why do I need a CT scan of my chest?" Well, I had the CT scan and this morning I was told,"the doctor wants to send you to a Pulmonary specialist." I further pressed for info and was told "they found sarcoidosis." I have been treated for asthma since the past summer (2000), and have had several changes in medication, all of which do nothing to help the breathing. I also have Chronic Fatigue Syndrome, Osteoarthritis, and Chronic Fibromyalgia. I know what it is like to not be able to walk any distance (such as crossing a parking lot, walking around the mall, etc.) I was thinking of starting a web site for all of us that suffer from this disease. Please respond with any ideas.
February 05, 2001 - Alison I was diagnosed with sarcoid two years ago when I went to see my doctor due to shortness of breath. I have been on and off prednisolone for two years and gained a lot of weight. My doctor seems reluctant to give me anything to control the weight but it's making me miserable. I'm 28 and there's so much I used to do which I can't now due to lack of energy and being overweight. I've suffered from permanent scarring and every time I come off the steriods it comes back. I also had a huge lump which grew on my neck but a biopsy showed sarcoid and the lump disappered leaving me with a horrible scar. A couple of years before I was diagnosed I suddenly developed eczema all over my body and then lost all my hair. Could this be connected? I feel like I'm the only one so it's nice to know there are others out there. Guess what I'll remember about life in my twenties?! I suppose you have to laugh, or you'd just cry.
January 28, 2001 - Trudy I was diagnosed with sarcoidosis in June of 1991. By June of 1992 I was on long-term disability. I have had sarcoidosis of the lungs, eyes, headaches, and eighth nerve of my ear (equilibrium). With the birth of my second daughter, the eye sarcoidosis hasn't reoccurred. With the birth of my son, the headaches are not as disabilitating. I still suffer from equilibrium problems and headaches daily and lung pain occasionally. After being on disability for 8.5 years, the insurance company let me go. This has left my family in financial diffulculties. I am fighting the insurance company through a lawyer, but there is not a lot of information about sarcoidosis in the eighth nerve of your ear. I also had half of my liver removed this summer with a large granuloma tumor in it. They said it was an hemangenoma or blood tumor. I have wondered if it could have been sarcidosis. If you have any info about sarcoidosis in the eighth nerve of your ear, please reply.
January 27, 2001 - Cindy I was diagnosed with sarcoidosis in Nov. 1998 through a granuloma in back of my knee area. I am always tired, suffer a lot with joint pains, especially in my arms and back. I also have arthritis in my knee and spinal cord. In the last 3 months I have been suffering with short breath, bronchitis and flu symptoms practically all the time. I would like to know what medication there is for shortness of breath and tightness of chest for sarcoid patients. I do not show any granulomas through chest x-rays-thank God! I also take norvasc 5 mg. a day because of high blood pressure. I have a tread mill and also would like to know if this type of exercise affects me more or if it's good for me? Thank you for your prompt response.
January 16, 2001 - Lars Hej! I'm a 45-year old male from the south of Sweden. A year ago I discovered I have sarcoidosis, but I don't feel anything at all from it. I go on tests three times a year, and everything seems OK. I want to get in contact with people in northern Europe, why not Sweden, Denmark and Norway. I've tried to find some kind of mailing list or so in Sweden, but I can't find anything. Is there anyone out there, who can help me. Keep on. LasseN
January 14, 2001 - Lisa Thank you Shari for sharing your mother's story. I'm sorry she has had the suffering of both diseases, fibromyalgia and sarcoidosis. I wonder if her lung sarcoid went into remission and what type/stage it was or is? With my dual diagnosis, I am going to go for neck and back MRI to rule out sarcoidosis tomorrow. Likewise, has she had recent MRI's of her muscular system. MRI's and biopsies are the best test for sarcoidosis that I am aware of. She may need medical tests to rule out sarcoidosis of her other body organs or systems as I am currently doing the same. I have no answer for her pain maintenance since all fibro cases are unique. Anti-depressants, pain killers, and muscle relaxers with anti inflammatories have worked for me to take the "edge" off. I check this site a few times a week, I really appreciate your info. so thanks for sharing.
January 07, 2001 - Shari Hello all, My mother, age 51, has had fibromyalgia (diagnosed 13+ years ago), and sarcoidosis of the lungs (diagnosed approximately 8-9 years ago). She has had a hard year. She has developed arthritis in her feet, and has had to stop working as a nurse. That alone devastated her. The hospital she worked for only paid her disability for 6 months then cut her off with no warning at Christmas time.(They said they thought her doctor had exaggerated on his statement of the level of her disability!) She now has zero income and two young children and her elderly mother to support. I am very worried about her, because her pain levels have gone through the roof, she has had a headache non-stop for over two months, and the doctors just seem bewildered by her declining health. My mother is confused, depressed, in constant pain, and now her blood pressure is extremely high. I am wondering if her sarcoidosis could be causing any of this? Any thoughts? I am desperate to ease her suffering. Thanks. Shari
January 04, 2001 - Lisa Originally I wrote on September 3, 2000. I am the only person I know of who is diagnosed with sarcoidosis (of the lungs and in remission) AND fibromyalgia. Recently I found a friend online with a fibromyalgia diagnosis who's mother is diagnosed with sarcoidosis (active in the lungs and spine). This is very bothersome to me and leaves us both with questions regarding our fibromyalgia diagnoses. Please, submit any information of your experiences with both diagnoses in the same family. My doctors, now knowing this information, have agreed to MRI's of my muscles to rule out sarcoidosis of the muscles, skeletal and neurological systems. Please keep your personal experiences coming! I have found more info. here than in "official" medical sites. Thank you for your input.
January 01, 2001 - Margaret I was diagonsed with sarcoid in 1989. Now the doctors say I also have Asthma. I really don't know what I have. I have stopped taking steriods because they made me have so many emotional problems. No medication I take seems to help me. I have shortness of breath all the time. There are so many things that I do that makes me get out of breath. I wish someone would give me some information on medicines that help. I can't exercise so I gain weight. My inhalers no longer work for me. I really think something is wrong with my heart more so than the sarcoid, but I have not convinced my doctors of this fact. Any coments leave here and will be posted. Thanks very much.