I'm despretely looking for some help. Over the last 8 yrs. I have been seeing a lot of doctors who have given me a lot of different diagnoses including sleep apnea, narcolepsy, and now Hemachromatosis. I'm sick of doctors putting bandages on my symtoms, giving me too many pills, not listening, thinking that I'm crazy, making up all of the many symtoms I've had over the years. Most of my symtoms have been fatigue and joint pain which my Hematologist says is from the Hemochromatosis. But about a year before my diagnosis, I started getting a bunch of other problems which seem to be neurological, such as cognitive, speech, vocal, eyesight, numbness, brain fog, and many others that come and go and of course are not there when I go to the doctor. Everything has gotten worse since my treatments not better. My Hemotologist told me to go see a shrink. I did consider it, but I'm positive that this stuff isn't in my head. After hundreds of hours on the internet searching for something that matches my symtoms exactly, I found the disease Myalgic Encephalomyelitis on the M.E. International website and a Humingbirds guide to M.E. website. Both sites listed a large amount of symtoms that came and went. I printed out the symtoms and highlighted the ones effecting me. I ended up highlihting almost 85-90% of them. I noticed that Canada and the U.K. recongnized the disease and that the U.S. didn't seem to as much and listed C.F.S. and M.E. as basically the same disease. The one from the U.K claimed that they are not the same and that M.E. can be proven by a pet scan and is simular to M.S.. I also saw that you need to have some type of Eypson Barr virus like Mononucleosis which I have had at least twice. My question is, are there any doctors that you know of in U.S. that recognize the two diseases as separate and are experts in M.E. that are in the U.S. that I can go see? I live up near Fargo, ND area so preferably as close as possible because I can't afford to go very far. Any other information someone might have on their symtoms, simular experiences, the disease, or doctors would be greatly appreciated. Thanks!
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