I am being tested for MAG and as I read your symptoms we sound alike. I have had these symptoms for 5 years and when it began to get worse on my left with shooting pains in the toe that seems to be dropping? I know transparency is good but I think I may have directed the Doc to the wrong one. I told him I was a binge drinker for many years and also some recreational drug use in my youth. 2 months ago I had MRI and CT scans which show a worthless L5-S1 which was not a shock as bothered me since HS. Last week when I reported the toe and left leg getting worse he ordered all the test which includes the MAG. I went online and found you and am a little freaked out. I am 53 and very active and still was able to walk 2 miles 3 times this week and lift weights for an hour so who knows. That shooting pain is really sharp but last a little over a second. Told my wife I might as well start drinking again! Kidding of course but I am glad I found you and will certainly keep you posted and hope you so the same. I have a challenge ahead and need to be healthy as mu Dad has Alzheimer's and counts on me....Trying not to panic.....
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Originally Posted by Granacki
I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?
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