← Return to Living With Large-Fiber Neuropathy

Discussion

Living With Large-Fiber Neuropathy

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

Comment receiving replies
@ray666

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

Jump to this post


Replies to "Hi, Steve (@stallen) I’m pretty convinced I, too, have a mix of large, small, and quite..."

So now you have Idiopathic Predominantly Large Fiber PN with Idiopathic Insignificant Deviant Variants?