I have been having severe burning pain for 1 1/2 years and lost 50 lbs in 4 months. no doctor seems to have any answers. 15 years ago i was diagnosed with b12 deficiency ?? ms. my evoked potentials suggested demylenation due to both legs and eyes being delayed on testing. nothing showed on my mri however. new evp (evoked potentials) shows delays on both legs but no delay on eyes. Another forum neuro suggested testing be done for small fiber neuropathy ( sweat test and skin punch biopsy) however doctors i have seen are not considering that. they don't like it when patients look elsewhere for answers. Does anyone know if small fiber neuropathy can cause delays in evoked potential testing? I would really appreciate any answers....who knows, that information, if answer is yes, may help me get sfn testing.

thank you very much!!

may I ask what you are doing for your B12 deficiency?

When was your last test and what was the result... including the concentration because in other countries besides US the readings are different and have to be converted.

If you are not treating your B12 problem adequately it can lead to all sorts of further damage.

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

You will be able to meet some wonderful fellow member here for each other. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around, please keep us up to date. My thoughts and prayers are with you.

Darlene

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.

Hello! My mother has small fiber neuropathy and about every 10 days she has these "attacks" where her entire body is on fire! She says it feels like someone is sawing her feet off and her torso! Most of the attacks go away after awhile...but we have had to go to the ER 3x in the past 2 months to help with her unbearable pain. After mom is admitted to the ER the doctors then give her morphine injections or an IV with morphine to ease the pain. Is this normal or is this disease slowly getting worse?
Does anyone else have symptoms like I have described?

Would love to hear back from you!

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.