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aljohnson1949 avatar

What are the most recent treatments for Large fiber neuropathy

Neuropathy | Last Active: May 13 5:07pm | Replies (33)
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Profile picture for megidigo @megidigo

@ray666

From my reading and lack of posts here and other online sources Ive gathered that this form of neuropathy is rarer. Not 100% on that. Regards to lack of pain you have - do you still have any sensation? I dont have pain but still get sensations all day that are very uncomfortable which I cant get my mind off of. Feels like my ligaments are being pulled and I fear that they are but when I bring it up with doctors it is ignored. Ive started to use exercise bands but I dont know if its doing anything but possibly even making it worse. Without regular “feeling” I cannot tell if its from the exercise. Im wandering if you have had similiar experience or do you feel normal other than the akward gait?
Also due to the 666 in your name there was a moderator on a neuropathy group on facebook with a similar type of name who was also a Ray (kind of horror related I would say). Curious if that is you? It was the first thing that I wandered as I saw your name here!

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Replies to "@ray666 From my reading and lack of posts here and other online sources Ive gathered that..."
aljohnson1949 | @aljohnson1949 | May 10 1:39pm

No that wasn't me.

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Ray Kemble | @ray666 | May 10 1:40pm

Hello, @megidigo

First, yes, that's me: the same Ray. Hardly a horror, though. 🙂

I do still have sensation. Not a bothersome sensation, but rather an "ordinary" sensation, so ordinary that I've had a hard time believing the results of my EMGs, which inform me that I've measurable loss. As I go about, I still have what I would call "almost normal" feeling of the ground (or floor or carpet). In fact, I found the diagnoses from my two EMGs to be quite puzzling.

I, too, put all my trust in exercise. As soon as I send this off to Connect, I'm going to begin my Sunday routine. (I do my heavier exercises on Sundays, Tuesdays, and Thursdays, because my therapist works with me on Tuesdays.)

Cheers!
Ray, the Not Too Horrible 🙂

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