Quote:
Originally Posted by akimbo
I have "idiopathic" peripheral neuropathy although I was exposed to Benzene and other VOCs in the workplace which I believe are the cause. Biopsy shows c-fiber neuropathy. Currently my symptoms are made bearable by Lyrica, but my pain has progressed from occasional burning on the soles of my feet 2 years ago, to burning, tingling, numbness, and sometimes searing pain below the knees and elbows. If I bump the ends of my fingers or my feet it is very painful. I have other sensory nerve symptoms: low blood pressure, migraines, constipation, livedo reticularis, cold body, memory loss, etc. I also have fibromyalgia which is currently leveled off.
I'm trying to plan my future (I'm 53) and wondering how much more disabled I might become. My neurologist said I won't be in a wheelchair but was otherwise evasive. I am finding walking increasingly painful, my toes are always sore, and my need for pain meds is creeping up. I am taking all the supplements my naturopath recommended, including 5000 hydroxocobalamin i.m. every 3 days, B6, Zinc, CoQ10, . . . I am currently on sick leave from my stressful health-care job. What does the future hold in store for us folks?
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I also have idiopathic SFN, and was also exposed to benzenes, and other VOC;s at my place of employment,, although I am told I have Sjogrens Syndrome, even though I have never shown the antibodies to it,, all I can tell you is this,, my neuropathy has progressed a lot in hte past two years,, first it was the feelig of water running down my legs,, to numbness,, burning,, then a progression up the torso to the arms and hands,, which burn constantly,, I do know about Neuros being evasive,, I am only 54 and the thought of beinin pain and in a wheelchair scares teh hell out of me,, its no way to live thats fir sure, I have tried jsut about all hte meds for PN,, and none workk for me, I have gone the IVIG route, was scheduled for Rituxin,, but a last minute infection made that impossible,, so what does the future hold for you and me?,, I really dont know,, but like I tell everyone else,, and it was said here a few times,, when I fall over and cant do a thing for myslef,, it then becomes someone elses problems,, I mourn for my old life