Several years ago I was told I had an IGA nepropathy meaning my kidney filters out too much red blood cells and too much protein. Every 3 months it is checked and sometimes okay sometimes not. No need for treatment and no real problems since and it has been about 15 years. Since that time I have been hospitalized probably 2 times per year with severe pnemonias, enlarged heart and other ailments. Seems I cannot get a cold without getting really ill. Latest is that I now have lung nodules and swollen lymph nodes in chest area. I have seen several specialist and have had all the tests. My doctor believes I have some sort of autoimmune problem but all the tests say no. For years I was told to say"anti-phopholipid auto immune disease of unknown origin" but now I am told no thats not it. All it meant to me in the past was get a cold get really sick take steroids get better. Now lung problems are permanent and not reversable and I have such severe muscle aches and pains that at times it is almost immpossible to function. One person cannot have 50 different things wrong with them. Auto immune, fibromyalgia, carpal tunnel, IBS, and the list goes on. I need a diagnosis of what is really wrong with me and real treatment. I am the mother of four, work full time, sit on the board of directors of several different private companies and have a very busy fulfilling life that is in serious danger of coming to an abrupt end because there are some days that I cannot function and somedays that my 8 year old helps me up off the couch. My newest pulmonary specialist sent my last biopsies to Mayo clinic and they didn't even have an answer except "Non specific subpleural fibrosis suggesting healed langerhans cell histiocytosis. There is follicular lymphoid hyperplasia seen in areas of fibrosis and subpleural benign lymph nodes are seen showing follicular hyperplasia. The pattern is not that of usual interstitial pneumonia. I believe we may be dealing with two co-morbid findings the first pulmonary fibrosis related to healed langerhans cell histiocytosis and the other etiology beign a rheumatic disease manifesting in the lung. HELP IF YOU CAN PLEASE :eek:Reply Follow This Thread Stop Following This Thread Flag this Discussion
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