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Old 10-24-2010, 12:20 PM
Hermes Hermes is offline
Junior Member
 
Join Date: Aug 2010
Location: Washington DC Area
Posts: 75
10 yr Member
Hermes Hermes is offline
Junior Member
 
Join Date: Aug 2010
Location: Washington DC Area
Posts: 75
10 yr Member
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Quote:
Originally Posted by Sheltiemom View Post
Hermes,

If I remember correctly, you're a non-length dependent small fiber neuropathy. If so, the face can definitely be affected by burning and light touch, but not by pressure touch. My face was always the worst as I've said tons of times previously. But I have Sjogren's Syndrome, and one of the things it messes up is skin. Mine has been the hardest hit because of the Sjogren's and because Sjogren's can cause NLD SFN.

Are you doing the supplements, especially B12 as methylcobalamin and B1 as benfotiamine, a vitamin/mineral complex, D3, R-alpha lipoic acid?

I couldn't take the meds you mentioned, or neurontin, etc. So the supplements are what I believe triggered significant improvement of the burning NLD SFN neuropathy. Also think that stopping Zocor forever last February (per the rheumatologist) helped.

Sheltiemom
Actually my DX is idiopathic polyneuropathy. The skin biopsy was negative for SFN so it is large fiber sensory? Not sure or are the drs apparently. I am on calcium/D3 but I haven't tried the B12, B1 or R-apha lipoic acid.
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