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question about neuropathy

Posted: Sat Nov 05, 2011 11:13 am
by Filmmaker
Hi everyone

Just wondering: does everybody wiuth MS suffer from severe neuropathy? What has been your experience with this symptom? also, did you feel it was related to the progression of your MS?
My neuropathy is more and more severe despite tratment with Elavil and lyrica...
It contributes to more and more weakness. But at the same type I saw neuropathy being linked to diabetes, leukemia, cancer... ffff I just can't stand this anymore...

Re: question about neuropathy

Posted: Sat Nov 05, 2011 5:44 pm
by lovebug
You and I both suffer from painfuly neuropathy!! I actually have allodynia. No drugs help even a little with the pain in my hands and entire arms. I have tried Elavil, Gabapentin, Pregabelin, Tramacet, Percocet and Oxycontin..........and the list goes on. I am currently trying different supplements with no help either. But I am going to start again trying `Jimmylegs` suggestion of Magnesium Glycinate 3 x day for a week so see if that does something. My family dr. is giving me B-12 injections every 2 weeks for 5 months to see if that helps the pain. I would stand on my head for hours if I thought it would help with the nerve pain. I am not looking for 100% pain removal but at least something out there might help. Any other suggestions????????????

Re: question about neuropathy

Posted: Sun Nov 06, 2011 2:17 pm
by jimmylegs
if you don't already, take b-complex with your magnesium too, lovebug.

Re: question about neuropathy

Posted: Sun Nov 06, 2011 2:18 pm
by jimmylegs
also, have you had your d3 or magnesium or zinc levels tested at all?

Re: question about neuropathy

Posted: Sun Nov 06, 2011 6:46 pm
by lovebug
I have had my D-3 levels tested several times in the past 2 years of having MS but not my zinc or magnesium levels. I realize also that I have not been actually told of my readings in these tests. I have just gone by the lab reports and my dr. saying that the levels are all ` o.k.` But in the future I am going to want a copy of those reports so I can more closely look at the readings myself. `Jimmylegs` has posted in different areas of this web site perhaps more accurately what the readings should be for pwMS. The past two years of being officially diagnosed with MS certainly has been a huge learning curve in my life!!!! And I will continue to say that this web site has been extremely helpful to ALL of us living with MS. I forgot to mention that I am also taking a magnesium, calcium and zinc supplement 2 x day but I am going to try the magnesium glycinate 3 X a day to see if it helps. I keep on trying...............

Re: question about neuropathy

Posted: Sun Nov 06, 2011 6:52 pm
by jimmylegs
keep up the good fight, lovebug - and yes always get your own copies of the lab work. 'normal' ranges are virtually useless.

Re: question about neuropathy

Posted: Sun Nov 06, 2011 7:05 pm
by lovebug
Yes if I knew at the beginning of my diagnosis what I know now just perhaps I might not be where I am today. And you are so right that we should not just blindly take these `normal` ranges from the lab as being totally accurate for us pwMS. But like I said I keep on trying to learn as much about MS as I can but its a tough road to follow............