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What are the most recent treatments for Large fiber neuropathy
Neuropathy | Last Active: May 13 5:07pm | Replies (33)Comment receiving replies
To all who've posted on this topic:
I'm sorry to see we haven't had more of a response. The lack of a vigorous response only reinforces my belief that those of us with large-fiber PN and are blessed with little or no pain––ony balance problems––have long ago stopped searching for answers and instead have re-focused all their attention on exercise in hope of forestalling any further deterioration in their balance. Nevertheless, I thought I'd add this post, chiefly so that the topic of large-fiber PN enjoys a short while on Connects "recent posts" list. After all, you never know. 🙂
Cheers!
Ray (@ray666)
Replies to "To all who've posted on this topic: I'm sorry to see we haven't had more of..."
@ray666 Hi, Ray -
Glad you brought the topic back for discussion - like you said, you never know. And I, too, am sorry there hasn't been more of a response as to new findings or even enthusiasm for research. It did cause me, though, to reread the printout of the diagnoses of my EMG and Nerve Conduction Velocity studies, and they definitely state that mine is Long Fiber. However, if I am not taking Pregabalin at regular intervals, the pain in my feet is excruciating. It has been so for many years but has not traveled to other parts as it seems to for some others. Hands, though also considered peripheral, were not diagnosed as PN but rather by Carpel Tunnel, and only seem to be painful when affected by the weather. Their other symptoms (tingling, weakness) respond to non-medicinal treatments.
Like you said in a later post, "Quite the puzzle". Amen!
Cheers, Ray, to a new week!
Barb
@ray666 You nailed it!
@ray666
I’m guessing that a lack of pain is the primary reason people don’t post.
My diagnosis of PN didn’t state short or long or large fiber; just noted lack of response in the bilateral sural nerves. From all the research I’ve done, I’ve concluded I don’t have short fiber PN because of lack of pain.
The tightness and tingling that started in my feet three years ago, has progressively moved up my calves, knees and now is mid thigh. My imbalance has worsened considerably to the point that I curb a lot of activity due to fear of falling. I exercise every day, although less vigorously as my balance, gait and proprioception worsen.
I worry all the time about further progression and utter lack of treatment.
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@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!