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Old 09-07-2009, 08:41 AM
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darlindeb25 darlindeb25 is offline
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Join Date: Aug 2006
Posts: 744
15 yr Member
darlindeb25 darlindeb25 is offline
Member
darlindeb25's Avatar
 
Join Date: Aug 2006
Posts: 744
15 yr Member
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Welcome to the forum Nancy.

I have had neuropathy for at least 10 years, if not longer. My first real diagnosis that I remember, was carpal tunnel at least 10 years ago. I do remember complaining about this ache and that ache, and being told I was too young for so many aches and pains. It is all gluten related for me, at least we think it was the monster that caused all this toruble.

I have gluten ataxia, sensory neuropathy, axonal neuropathy, arthritis, and good old sleep apnea. We will never know where my B12 level was way back then, no one ever tested me for the level. Five years ago, I started taking B12, and will always take it. There finally has been minimal improvement, which is all good. I take 5000mcg daily of Jarrow Methylcobalamin Sublingual B12, and my neuro told me to continue with this dose. My last level came back at 1016. I'm thinking it must have started out pretty low.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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