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Old 01-19-2016, 12:47 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by baba222 View Post
Yes, my is intermittent. It is sometimes bee stings, sometimes sharp. It is painful to touch my face and to be touched.

So sorry for your suffering.
Braveheart I'm sorry your neuropathy is affecting your face. I've had small fibre neuropathy slowly progressing for five years now and my face is quite badly affected. My mouth is worst with the pins and needles and tightness in my gums and it goes up into my nose and into my left eye. I don't get huge pain with it or shocks but just this twitching and feeling like I have a Hoover nozzle stuck to my mouth and nose? So horrible. I can't tolerate Gaberpentin or Cymbalta or Amitipyline so I make do with paracetamol and the odd sleeping pill. Lately I've been trying antihistamine and it does seem to help me sleep a little but my small fibre neuropathy has changed from pain to numbness and icy cold.

I don't know what is causing mine but it's very widespread and I've had a lumbar puncture and all other tests so my neurologist has ruled out MS and Guillaine Barre and my rheumatologist has ruled out my RA or Lupus because I have no autoantibodies or immunoglobulins showing up. He therefore thinks the problem lies elsewhere but can't say where I should turn next. I'm thinking of endocrinology and have been referred back to neurology. I see an oral surgeon tomorrow. The last one told me he only ever sees this in patients with MS.

Good luck getting to the bottom of your problems more successfully than I have.
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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