← Return to Feeling quite ill for over a year - not yet been diagnosed.

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@sashasamantha

Hello, I have some similar symptoms which started almost 3 years ago and I am in constant debilitating burning pain from chest to pelvic area with GI motility issues and now sometimes head and other areas have nerve "sensations". No help from any docs and neither Jacksonville nor Minnesota Mayo could get me in for diagnostic workup. After lots of studying, I believe these things start as infection or possibly a central nervous system herpes virus reactivation which no doctor seems to understand, test for or address in any way. This can include Epstein Barr, HSV1 and 2, CMV and other viruses most of us carry but are not familiar with. For central nervous system infections a spinal tap may find it. Of course other pathogen types could be involved. Such infections may then possibly cause autoimmune conditions and the red dots (I also get) can be indicative of vasculitis, among other possibilities. I asked for ANCA panel test came up positive for proteinase 3 but still no diagnoses. Also ask for immune globulin, mast cell activation (allergist/immunologist)tests and neuromuscular antibody panel (published by Washington Univ) some of the results of any of these could be an indicator to at least point you in a direction though I myself am getting nowhere with doctors. Hope to keep in touch and keep each other posted

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Replies to "Hello, I have some similar symptoms which started almost 3 years ago and I am in..."

We’re you tested for small fiber neuropathy? It may be worth it in your case