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June 11, 2000 - Charlene We have two friends who are in varying stages of Sarcoidosis. One is hospitalized now with lung complications and is undergoing further testing and diagnostic procedures to confirm this disease. We are looking for the best possible treatment center in the U.S. I found a Site somewhere that listed the centers specializing in Sarcoidosis, but have been unable to find it again. Can you help us?
May 18, 2000 - Shheils I was diagnosed in 1998 as having sarcoidosis. My lung had been collapsing for a long time and it was during a second operation to stick and staple it that a routine biopsy was performed confirming the disease:( I've made a CD and tape of beautiful soothing melodies for flute and piano called 'a breath of air' to raise money for the British Lung Foundation and if anyone out there would be interested you can find out more at http://members.aol.com/shheils Has anyone had collapsed lungs before and how do you know if sarcoidosis is affecting your eyes - I've got 'floater' but I'm not sure if it is just old age:)
April 24, 2000 - Karen I had first posted my comments Feb. 26/00. I thought I should write again with my husbands update. His cardiologist found no sarcoid in his heart and his ophthalmologist found no sarcoid damage to his eyes. His rheumatologist has been great. Prescribed anti-flammatory and anti-depressants. Then decided to go ahead with predisone, but only for a two week period. He then went for his breathing test. It came back normal. He still has chest and joint pains. He also still takes blood pressure medicine. Looks like his health is slowly improving. Thanks to all who post here, your comments helped us see the light at the end of the tunnel. God Bless you all
April 24, 2000 - Takis My name is Takis. I am a male patient of sarcoidosis. I come from Greece, 43 years old. My sister has the same disease, and my father too. I have known it since 1982. During the interval time, I had forgotten sarcoidosis, until 1995, because I did not have any symptoms. The medical examinations, during 1995 and 1996, revealed the sarcoidosis. The symptoms was: sometimes a little dyspnea, spots on the skin, sometimes arthralgies and headache). On 1/8/1996 a 25mgr of Prezolon treatment was started for 11 months (in the last 2,5 mgr Prezolon). In the first 15 days, I had a big improvement. The dyspnea, pain in the bones, spots on the skin was disappeared and I felt like child, without any fatigue. The medicines consulted me to continued the therapy until 30/6/1997. I felt very well, for 5 months, after the end of this therapy. Since then (November 1997) I felt dyspnea, first time, and small fatigue. In December 1997, February 1998 and April 1998 I had crisis of dyspnea for 3 weeks each time. The lungs tests was naturaly. After April 1998 until August 1998 all the symptoms was disappeared and I felt very well. On 1st August 1998 I started the second treatment, under the instructions of doctors. I thought that my destruction had started since then. The first doses was 48 mgr Medrol and 2 pills (100mgr) Imuran (Azathioprin). I felt very bad, with dyspnea, destruction of my face (Gushing), fatigue, increase of glucose (average 1,5), blood presure, pains in all of my bones and muscles. I finished this terrible treatment in 30/6/1999, without any obviously improvment. As Conclusion, I think that the 2nd treatment didn’t needed. It was not so effective although the doses was bigger. From now on, I think that the steroids are useless, because I understand that they made to me more bad than good. After the end of 2nd therapy, I feel that every day sarcoidosis is growing up more than before. Now I don’t take any medicine. The symptoms before 4 months was: pains on the bones (arthralgies), osteoporosis, I felt like old man (fatigue, lethargy, listlessness, but not muscle weakness), sometimes chest discomfort, myopia is on the increase in the right eye, tears is not being, some spots on the skin, reddish nose and upper face with pain, a few red or brown blotches on my face and I didn’t feel the touch on my skin very well, (like torpor) and overall a sense of grippe (without fever 35,5oC - 36oC), sometimes dyspnea. Now the symptoms are: dyspnea, fatigue, itches, a "heavy" on heart, lethargy, high blood-glucose and pressure. Sometimes the spots on the skin are appeared and disappeared by themselves. The most of pains in the joints and bones have been disappeared, but a pain on the muscless of my right elbow like fybromyalgia, sometimes headaches. The pulmonary tests and all of the blood tests are normal. Why I have dyspnea and the others symptoms of sarcoidosis ? I would be interested in any of the readers experiences about the treatment of sarcoidosis (without steroids) and would also like any information on this disease or if you need more information about me please feel free to reply. Thanks you.
April 15, 2000 - Barbara I am a forty three year old British mother of two. I was diagnosed with the disease in October 98. I am on the usual steroid treatment. I have tried to come off the steroid treatment several times; only the disease returns with all the usual shortness of breath, tiredness, depression, joint pains. I have the lumps most places, and I have had a biopsy done on the one on my arm. This all seemed to start after I had to have a sinus operation. All of my sinus's were blocked and it took over a year for me to notice a difference. They noticed my chest was bad, and thought I had an infection. After several tests, they discovered Sarcoid which of course I and many others had never heard of. Until I discovered this web site I had no one to talk to about it. I would love to hear from anyone out there just to chat, and find out how we are all doing, my specialist is not easy to talk to, and tends to treat me like a guinea pig. I would love to know of any other treatments other than the steroids. I am on 10mg a day, if I take any less back it comes; if I take more I pile on the weight. My husband and family say it is like living with Jeckle and Hyde. Any way please write soon, I would love to be in touch with someone who really knows how I feel, many thanks.
April 06, 2000 - Joseph My wife has been very ill for quite a few years now with some sort of systemic illness. It now looks as though she may have something called neurosarcoidosis. Is there anyone out there who happens to be suffering from this disease? Or is there anyone who can give us any information at all on any aspect of the illness? If so we would really like to hear from you. (Post your reply here) Thank you for taking the time to read this. Kind regards and Good luck. Joseph.