Magnate
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Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
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Magnate
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
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I second Mrs. D's suggestion for a trial of Elavil--
--which has certainly been useful for many for both it's neuromodulative (pain dampening) properties and its anti-depressive properties.
I am currently on no meds at all, having weaned myself off gabapentin two years ago (at one time I was up to 2400mg/day, but I'm a big guy)--I was lucky it worked for me at the height of my acute-onset (hours/days) body-wide burning neuropathy attack, of which the only evidence was small-fiber de-enervation upon skin biopsy through Cornell-Weill, which still follows me as a case and has tracked me with subseuqnet skin biopsies that show slow but definite re-enervation. (A presentation like mine is rather rare--there is a researcher at Hopkins, Dr. Abhey Moghkar, who speculates such acute-onset body-wdie syndromes, of which he's encountered about a dozen, involve a selective attack on the dorsal root ganglia, and are sort of the small fiber equivalent of Guillain-Barre syndrome.)
I'm on a lot of supplements, though--vitamin D3, methylcobalamin B12, B-comples, magnesium citrate, R-lipopic acid, lots of fish oil.
My daily symptoms now have more to do with an unrelated right side cervical (C5-C7) radiculopathy, secondary to a rhomboid muscle tear and hypertrophy of the spinal processes--the tingling and numbness in my right hand/fingers/arm is very different from my original burning symptoms. I may have to bite the bullet and get a foraminotomy one day soon. I also have a pelvic/sacral twist, and a left leg two cm shorter than right, which tends to result in impacted nerves in the sacral/sciatic distirbution.
I am still prone to flares and very vulnerable to compressive symptoms, though. Some of this may be due to the fact that as I've slowly re-enervated (my original neuropathy "attack" was quite acute--hours--and peaked over some months, then began to recede--it appears to have been a monophasic event), the fibers grow in different configurations than they were originally, working around muscle and bone, and so are easily compressed. I get tingles/shoots/electrical things that start up suddenly, hang around hours/days/weeks, then depart just as suddenly. Sometimes I get these after exercise--even engorged muscles can set them off.
What Cornell-Weill most gave me was a comprehensive testing framework, very thorouugh examination (I've never has less than a half-hour appointment there, and my first intake appointment ran two hours, with the physical being the most comprehensive I've ever had), referrals to other specialists (met a great endocrinologist the Center collaborates with in research who has an interest in neuropathy), the ability to do skin biopsy, and the sense I was being believed--too many doctors before that seemed to think, with all the "normal" test results--very common in small-fiber syndromes--that it was all "mental".
It is true that I'm an interesting case for them--and that my knowledge of the field and the research (all self taught) is on a par with the docs there--probably why I get to have these discussions with Latov, Sander, Chin, etc., and yes, Latov has mentioned having symptoms of vasculitically based neuropathy. (He's not the easiest person to talk to, but I can say things like " how did your work on nerve autoantibody lead to the development of your ganglioside agglutinin test", so that may be part of it. And they're used to seeing me around there for follow-ups, subsequent skin biopsies, and the like.)
Currently, my original neuropathy is considered to be slowly resolving, though I don't know if I'll ever be symptom-free (the research literature that there is on this type of presentation, admittedly sparse, does not seem to indicate full recovery). I'm still officially idiopathic, though post-infectious autoimmune molecular mimicry mechanisms are the leading theory for what happened.
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