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Re: Unknown sinus, eye, and skin disorder

Re: Unknown sinus, eye, and skin disorder

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Posted by MaryAnn on November 02, 1999 at 02:44:06:

In Reply to: Unknown sinus, eye, and skin disorder posted by Alexandra Zaleski on June 27, 1999 at 13:12:53:

Hi-
I might be leading you down the wrong path, but since nobody has been able to diagnose your problem, I feel you should see a rheumatologist and ask him about primary and secondary Sjogren's Syndrome. All of your symptoms go along with that disease, (I know it very well). The only way to diagnose it is to have a Ear, Nose and Throat Specialist do a biopsy of a saliva gland in your lower lip (it's not a big deal). If you choose to do this, I pray it is an answer for you as I know from experience how frustrating and depressing it can be to find out what in the world is going on with our bodies that are making us so miserable we can't work, play, etc. Warm thoughts. MaryAnn

I am searching for anyone else in the world who has anything similar to what I'm going through. I am 33, and for four years I have been suffering from a horrible, progressive condition that is still undiagnosed, although the consensus (by process of elimination) is that I have some kind of allergic/autoimmune problem similar to cutaneous vasculitis. It began as a violently itchy conjunctivitis and swelling around the eye, progressed to the sinuses and throat, and now it basically affects all the skin and mucus membranes of my eyes, nose, and throat. I have been to hundreds of doctors, and not only are they totally lacking in knowledge about the condition, they are insensitive and uncaring. I have become unable to work, but I can't get disability because I have no diagnosis. I have no family support and I'm completely alone, but getting out and seeking a community is impossible, because I'm in so much discomfort all the time, and any activity exacerbates it. An acquaintance of mine who has allergies got me in to see a homeopathic biochemist who practices "orthomolecular medicine," which is basically homeopathy combined with nutritional therapy. Apparently this is helping some people, but I have been taking the treatments for almost a month now and I'm still going downhill, faster than ever. I suffered a lot of personal losses (death of my mother, breakup of serious relationship) prior to developing my illness, and I know all the sadness is feeding my physical illness. Nevertheless, please, please don't anyone tell me to get psychiatric "help": I've been through it all and it is completely, totally worthless, period. Maybe spiritual help is the answer, but not psychiatric. I've just about given up hope that I'll ever get better, but it's a double whammy, because the illness isn't killing me; it's just making my life hell. I desperately need a remedy so I can go on physically. Does anyone know of a health care practitioner who is really onto something for these diseases, or are all these remedies just snake oil and "wishful thinking"?




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