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April 15, 1998 - T. McDonald I was diagnosed with sarcoidosis in September of 1997. This diagnosis occurred during a regular physical examination, when an irregularity appeared on my chest x-ray. At that time, I had no obvious adverse symptoms. Needless to say, I was quite concerned not knowing what this irregularity was. Soon after the initial x-ray, I went through numerous blood tests, additional x-rays, CT scans, and tissue sampling to hopefully confirm this ailment. Since then, I have had mid back pains almost every day. This leads me to believe the onset of this disease may have happened right around my physical examination. At times the back pain travels from my mid back area through to what seems to be my stomach area and limits my activity. I do not know for sure what arthritis feels like but I can imagine it must be similar to this. Currently, I am taking antiinflammatory medication and it seems to be working a little. Through reading other reader comments, it is somewhat comforting to realize that I am not imagining these conditions and that we are not alone. I am also wondering if physical therapy or exercise might help alleviate these conditions. If anyone has similar symptoms, could you please e-mail me. Thank you for this forum.
April 04, 1998 - JWB I have been suffering with Sarcoidosis for at least three years that I can remember, but I have just finally been diagnosed with this mystery disease. My major problem has been a chronic pain in my thoracic mid-back. I have had that for at least three years and have gone to doctors only to be told I had Fibromyalgia, arthritis, muscle pain, or depression, and looked at like I was crazy. I have been taking several different drugs (anti-inflammatory, muscle relaxers, antidepressants, anti-anxiety and several different pain medicines. I have just been put on 30 mg Prednisone to take daily for three weeks and then let the doctor know if it helps. I am praying that it does as this pain I have is getting old. I believe I have this sarcoid in other parts of my body. It took 3 years of doctor visits to finally get a biopsy of an enlarged node that showed up in a CT-scan originally over a year ago. The doctors didn't think the enlargement of 1 cm was enough to worry about. Meanwhile I think I am depressed and start believing I'm crazy because I am in pain and doctors are telling me it is in my head. This node is what has been causing the pain in my back. I know that 'cuz I was awake when they did the bronchoscopy for a sample to biopsy. I felt them touch the node getting the sample and it was the place where I have been feeling the pain. I have been run down and sick with colds and flus and coughs and shortness of breath as well. I have been having chronic yeast infections for several years, for which I have been tested for AIDS and diabetes. Both tested negative. I'm not sure if the yeast infections are related to Sarcoid yet or not? I hope the prednisone works. Thanks for reading my story.
March 24, 1998 - R. Breidenbach I would like to share with others that the father of my daughter, my x-husband, David Edward Pleasant, died 3-21-98 at age 42 after battling 15 years with Sarcoidosis. I hope you let me take a moment to share. He was always looking for alternative ways to treat his condition besides predezone. He helped develop support groups in our area, talking with others across the United States, looking and searching for a cure to better his life, until his health started to fail. To the extent he reached out, we don't know. He found a lack of understanding from many who had never heard of the disease, and those of us who never understood it. He started to feel loneliness and isolated. In the beginning, he searched for others to share with, to encourage, and give hope to. In the end, those of us closest to him didn't understand the disease of Sarcoidosis. I thought he would get better, and it really wasn't that bad. But it was... Today, I know he is resting in a better place, with no pain & heartaches. The disease of Sarcoidosis is finally cured for him. I pray that we find out what causes this ugly disease, and then put a stop to it. If you have loved ones or friends with Sarcoidosis, lend a caring heart & hand. Love & Happiness to all.
March 24, 1998 - Lorna I am very pleased to find this web site. Thank you. I am a 44 year old white female who was diagnosed with sarcoidosis 5 years ago. Symptoms first appeared after the flu. I had pain and swelling in my knees, legs and ankles, erythema nodosa, fever, fatigue, and a chronic cough. I was diagnosed 6 months later following a chest X-ray, CAT scan, (they said probably Hodgkin's lymphoma, even though my mother had had sarcoidosis) and finally a medianstynoscopy, biopsy of lymph tissue in my chest. I did not seek treatment at first, but went on an allergy detection diet and discovered a sensitivity to wheat and corn. By avoiding wheat and corn, my fever, swelling and pain went down almost immediately. The erythema nodosum cleared up several months later, and the cough very slowly subsided. I got iritis in my eyes, and found no way to control it other than prednisone drops, which I still take at a low dose today, five years later. I have no other symptoms that I am aware of, but still have an abnormal X-ray. My eyes are not good -- every so often I try to decrease the drops but the iritis comes back, reminding me that the sarcoidosis has not gone away. I have light sensitivity, and also clouds of floaters, which my opthalmologist does not think are related to the sarcoid. However, I would like to be rid of this sarcoid completely. I have not been fussy about my diet lately but it made a startling difference during several months in the early stages. It may be worth trying. I have recently discovered a milk sensitivity with regard to a wheezy cough I have. Does anyone out there have experience with diet and sarcoidosis? I am also considering trying melatonin for it.
March 23, 1998 - Kathryn I'm 25 years old and I've just been diagnosed with Sarcoidosis. My lymph nodes are enlarged, my ACE level is 77 (normal is around 67 I think), I have a rapid pulse rate of 99 when it's supposed to be around 50 or 60 for someone my age, and I have an annoying rash that itches like crazy. I've also had problems with my lungs and joints for quite a few years. My case is like many others. I went to see my family doc, who's an internist, with erethyma nodosum. I really give him a lot of credit for diagnosing me so quickly based on what I've read in the past. Now I'm waiting to see a sarcoid specialist in Philadelphia to get the details. Even before my family doc gave me a definite diagnosis, I began going to an accupuncturist to be treated for allergies. As many of you probably know, sarcoid is an autoimmune disease. Your body is freaking out to something that science hasn't been able to identify -- that's why it's a mystery. So by being treated for allergies I'm hoping that my body will stop reacting. But one can only hope. I've also been trying to do a lot of positive thinking. The mind is our most powerful tool, I really believe that positive thinking is critical to fighting this disease. Staying as active as possible is important too. I realize I'm just a rookie compared to many of you, but we have only one life to live so let's do the best we can.
March 18, 1998 - Thomas Has anyone tried low-dose Methotraxate therapy without prednisone, and gone into remission?
March 11, 1998 - S. O'Brien I am 32 years old and began the long process of diagnosis of this disease nearly two years ago. I have undergone 7 biopsies, of skin and a minor salivary gland which conclusively diagnosed sarcoid. My symptoms started with swelling in my feet and lower legs and constant pain in my joints. I soon developed eurythema nodosum which lingered for approximately 6 months. As this began to clear, I developed parotidis and uveitis which lasted for over a month. I have been considered an "unusual" case as I had not, until the last 6 months, presented with the typical lung involvement. I am now in stage two of lung involvement. It has also been discovered that I have some involvement with my liver as shown in a recent ultra sound and confirmed with a CT scan. I have also been diagnosed with dermatitis herpetiformis which I have been told is seen in approximately 3% of sarcoid patients. Have any of you experienced this skin condition? It is not typical of sarcoid. I have had open sores in my nose for over 1 year and I have been getting sores in my mouth and on my tongue for the past 3 or 4 months. Is this related somehow? I am constantly exhausted, depressed and afraid. I know that there are many in far worse shape than I am, but I am frightened of where I am going to go from here. I seem to spend more time at the hospital undergoing tests and at specialist appointments than I do at work anymore! I would welcome the opportunity to correspond via email with anyone who is sharing similar experiences. I thank you for taking the time to hear my song of woe.
March 09, 1998 - Carol I was diagnosed with sarcoidosis in 1989. The physcian found all my lymph nodes involved and thought I had Hodgkins Disease. A biopsy from the groin found sarcoidosis. Since then I had 6 biopsies taken from my lungs. I suffer from chronic fatigue, joint pain, coughing, one side of my face sagged, weakness in my legs, shortness of breathe, and constant lymph node aching. Even my gums throb. I went to Mayo Clinic, where they confirmed it. For years I was told my complaints were in my head, and because of weight. I have had sarcoidosis they decided approx. 21 yrs, 12 yrs of being told I had nothing wrong. It is comforting to find people to talk to who can understand what is really happening. I have two toes and 1 ear that have purple spots caused by sarcoid. Short term memory is fleeting. I quit my job and find that I am feeling a little better. But, I am not bad enough to get disability. Coughing eased slightly with prednisone, and inhaler. Massages make the body relax and feel a little better. I am tired of always hurting. Comments are welcome.
March 01, 1998 - Peggy My 23 year old niece was just diagnosed with sarcoidosis in February, 1998. We live in Alberta, Canada and the doctors don't seem to have a lot of information on this. If anyone could help us out with anything please let us know. She has it in her lungs and lymph nodes. She has shortness of breath and sounds like she has bronchial pneumonia all the time. As I am writing this, she is making arrangements to go to Mexico to try chelation. Will let you know if there is any change to her condition after she comes back from Mexico. We don't have much information on this disease and would like to get any that we can find. It sounds pretty scarey after reading the comments on this page. We are hoping that maybe the chelation will help before the disease gets further along. She is on prednisone already. So if there is anyone out there that can make this any easier please do so.