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Originally Posted by titanrules
hi and thank you for your reply. originally it was back in the 80's when i started have long spells of dizziness that the docs found b12 deficiency however back then they did not connect the two together. the docs were puzzled and said that it could possibly manifest into ms. in 95 my legs began giving out and my vision went wacky. mri was clear, evp (evoked potentials) in eyes and legs were delayed. still thought it could be ms. last 2 years i have had widespread burning pain that initially came in 2 bouts including complete loss of voice both times. then the burning came and never left. again mri is clear but evp shows delays only in legs not eyes and mri is clear. for 13 years i went for monthly shots of b12 and for the last year have been taking slow release b12 orally. 2 drs i saw unrelated to neurology 1 haematologist for blood clot and a rheumy to rule out vasculitis (family history of it) suggested i get tested for small fiber neuropathy as it sounds like sympathetic nervous system has been affected. i sweat like mad even when i am cold, skin temp is different in different areas of my body. no one seems to have answers. neuros do not like other dr opinions so it is impossible to get sweat test and skin punch biopsy. i have even considered going state side to have them done but we are not wealthy and i have no idea of cost. i am on a plethora of pain meds and yet still have break through burning. also i am hypersensative to all kinds of antibiotics and ant-convulsants.; i think i've covered just about all of it. thanks again for your reply.
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I have a diagnosis of RA and Hashimotos rather than Pernicious Anaemia but have been extensively tested to rule out MS, Lyme and other immune mediated neuropathies. The test they don't do in my area is the sweat test and it is the one I feel might be most relevant to me. My RA is currently thought to be in active, my thyroid bloods within "normal" lab range. Like you I get these bizarre circulation issues, wake in the morning with stocking cold sweats and a lot of pain on the inside of my ankles up into my knees. Hands and wrists ache, are stiff and I get burning pain in the nights and episodes of shooting pain during the day in these.
Meanwhile during the day times the pain changes and becomes more of a wet, cold tingle reaching up into my thighs, as if I'm standing in cold water. I also have what is thought to be trimenangial neuralgia which is the worst pain because its nearest to my brain - like a headache. I am constantly tired and losing weight because I have lost my sense of taste and smell now too so food is uninviting.
I'm being assessed for various types of Vasculitis now and my ESR is high at 66 - which I'm told is autoimmunity rather than specific to any one disease or condition. My ANCA is negative for some types of Vasculitis and my RA is seronegative too. I can't offer you more advice but can offer plenty of sympathy. I see the neurologist and maxillofacial surgeon tomorrow - hope one or both will be able to help me but not counting too much on it.