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Old 10-15-2016, 03:58 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
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by Summerfun View Post
I found the details of your appointment very interesting. Thank you for sharing. My neurologist is also "scared" of some of the drugs because of the lack of evidence of efficacy. So I am on Gabapentin masking the symptoms. I am including a link to an article I read recently about Pregabalin regenerating nerves in mice with spinal injuries. Honestly, I don't understand a lot of it. Keeping fingers crossed that something will be found to help us. Best of luck! Researchers activate repair program for nerve fibers: Releasing molecular brake allowed damaged neurons to regenerate - Medical News Today
Very interesting link thanks Summerfan - doesn't swing it for me though. Gabapentin made me very angry and unhinged. I only lasted on it for a few weeks - I was totally bombed with visual disturbances and fatigue and my husband said my personality changed. I don't know if our neuros are right about immunosuppressants and these big guns. Certainly steroids and the four disease modifiers I tried (and had allergic reactions to after a while) were easy to stop and I was very well monitored on them. They seemed to help a lot with neuropathy and I believe this is because they tackled the systemic inflammation which I think causes my neuro symptoms.

I wrote to the neuro today. See my response to Bluesfan if interested. Mat
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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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"Thanks for this!" says:
Summerfun (10-21-2016)