Quote:
Originally Posted by Sheltiemom18
Hi,
I'm a sero-negative Sjogren's whose first major symptom was small fiber neuropathy, non-length dependent, that was diagnosed by neurologists via skin punch biopsy right away because my skin was "on fire." That's gotten a lot better, but still have skin discomfort and am now completely photosensitive.
Have the dry eyes, mouth, nasal passages, airway, skin.
My neuros all have said that small fiber neuropathy is "huge" in people with Sjogren's. So the community is aware of the connection, but as there is no cure for Sjogren's, the neuropathy is only treated symptomatically with anti-depressants and anti-seizure meds. Sometimes chemo drugs are used. I'm afraid of all of them because of the side-effects.
However, I believe my neuropathy improvement is due to taking specific vitamin supplements (not herbal anything). B12 as methylcobalamin, CoQ10,
R-alpha lipoic acid (not "S"), B1 as benfotiamine. Taking too much B6 can cause toxicity, so I stay with a good multi-vitamin/mineral one a day formula.
Oh yeah, and the fish oil/Omega-3 the rheumatologists prescribed.
Lily
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Hello, Lily. I also have peripheral neuropathy related to Sjogren's - about 4 years. I have tingling in arms and legs as well as pains that some and go all over my body. I'm very interested in your supplementation regimen. Just recently I've discovered that B-12 seems to stop some of my pain and weird numbness sensations. But it think I'm needing a crazy amount like 2000 mcg at least daily. I've tried the benfotiamine a couple of years ago and still have some, so I'm thinking of trying that again. Will you please give specifics on your dosages and some of the your logic and experience with these supplements. I would be so so grateful for your sharing!
Thanks so much, Michelle