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Living With Large-Fiber Neuropathy

Neuropathy | Last Active: Mar 6 4:20pm | Replies (35)

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@stallen

Hi Ray…I’m heading towards 62…and started having symptoms 7 yrs ago . An EMG/nerve conduction study showed I had neuropathy. My Dr never specified what type…however if it showed on the nerve tests, I concluded it was large fiber neuropathy. I also have some autonomic involvement per testing, which tells me that’s a small fiber involvement also. The Dr that did nerve test stated that if you have one form there’s a good chance you have both.
I also have limited pain…the pain I do have is more joint and muscle. My legs feel like they are progressively getting weaker…And they tire easier. I can feel altered sensation in most of legs as well as hands. Like you my balance is affected also.
I walk 2-3 miles a day as well as do 20 min on an exercise bike.
I don’t know as I ve learned to live with it nor accepted it…it’s quite depressing at times…mostly thinking about how it’s going to progress. The other feature of this is the fatigue/lightheadedness that goes along with it.
I’ll be curious to hear the results of your genetic evaluation.
Best wishes to you.
Steve

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Replies to "Hi Ray…I’m heading towards 62…and started having symptoms 7 yrs ago . An EMG/nerve conduction study..."

Hi, Steve (@stallen)

I’m pretty convinced I, too, have a mix of large, small, and quite likely autonomic PN. None of my doctors ever gave his or her opinion straight-out; I had to ask, to get them to say, “Very likely.” I’m convinced however, that large-fiber is the valley’s biggest gorilla; for now, anyway, that’s how I’m announcing myself: “idiopathic, predominantly large-fiber PN” (not that I go around announcing myself).

My legs, too, feel like they are getting progressively weaker. They may not be; it may be only because, with all mt sit-to-stands and walking (nothing like your daily 2-3 miles!), I asking more of my legs. I’m not sure. I sometimes think of my PN as a threefold punch to the gut: poor balance, a wobbly way of walking, and ever-weaking legs (all contributing to each other). There’s only so much I can do to improve my balance or steady my wobbly way of walking; I would like to think, however, that I CAN to something about strengthening my legs. I find myself focusing more and more these days on just that: strengthening my legs.*

*An awful thought: Might another one of PN’s cruel thefts––along with the theft of our internal gyroscope that helps up stand steady and walk straight––be the theft of our leg muscles birthright capacity to improve with exercise? Is that gone, too? That’d be a tough one to live with.

The results from my genetic test are inconclusive. I was impressed, though: well over a hundred genes had been looked at. Only one gene of all those genes was determined to be a “variant.” My printed report reads, “We interpret this variant as a variant of uncertain significance.” The NP said, folding and handing the report to me, “Dr. Wolff and I agree, there’s not much we can do with the results of your genetic test.”

And there endeth today’s sermon. 🙂

Cheers!
Ray