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What are the most recent treatments for Large fiber neuropathy

Posted by aljohnson1949 @aljohnson1949, May 3 10:24pm

I am 77 years old and was diagnosed with large fiber neuropathy 3 years ago, however , I have been experiencing nerve loss for several years. Starting in my upper thighs and slowly traveling to my feet , arms , shoulders and hands. I would like to know if there are any experimental treatment programs going on that I might participate in. I am from the dallas texas area.

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kayejen | @kayejen | May 13 10:47am
In reply to @aljohnson1949 "I too worry about balance issues and what the long-term impact is going to be. I'm..." + (show)
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I too worry about balance issues and what the long-term impact is going to be. I'm 77 years old and my only hope is to outlive this condition and just maybe, just maybe there will be some discoveries in the near future on how to cope and lessen the impact of this debilitating disease. I guess I can refer to it as being a disease. I also have continued to exercise daily and still find that stretching is my best friend. I plan to start a Tai Chi class in a few weeks and hoping that this will improve my balance issues.

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@aljohnson1949 I was diagnosed with PN 5 years ago. The usual, feet burning, legs burning, bee sting type feeling in my legs and weakness. The PN is now starting to cause me to lose my balance. I now rely on a walker and cane. I use the walker for my "in house" walking, and I use my cane for outside walking (shopping, doc appointments etc.) And, yes, I do refer to PN as a DISEASE. An incurable, so far, disease. I read up on just about anything I can in the new technology in regard to PN...but NO CURE so far. I/we just have to try to find the best help for the PAIN associated with PN and that is almost impossible. My neuropathy pain doctor is now trying to get a PAIN PUMP approved by my insurance and if insurance approved, will have the PAIN PUMP surgically put into my left hip. So now it is WAIT TIME for me

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kayejen | @kayejen | May 13 11:01am
In reply to @ray666 "Hi, Barb What pleasure to catch you in research mode! So, longus is longus and never..." + (show)
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Hi, Barb

What pleasure to catch you in research mode! So, longus is longus and never the twain shall meet. From all that you say, I'm just about persuaded that what I've got is longus and not large. Or what I've got is some kind of amalgam of the two. I second what you say: Let the research continue!

My apologies for this being a shorty. I need to run* to the bank before it closes. (*figuratively speaking)

Ray

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@ray666 Hi Ray - and NO CURE! as far as I've read up on...NO CURE for PN. The nerve endings are dying in certain areas of the body and that could be any area. But, for some reason, people refuse to believe that there is "NO CURE" for this horrible disease. A person with PN just has to have a neuropathy pain doctor to help them find some prescribed pain medication that will help them with the terrible pain. And, Yes and please, LET THE RESEARCH CONTINUE!

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Ray Kemble | @ray666 | May 13 5:07pm
In reply to @kayejen "@ray666 Hi Ray - and NO CURE! as far as I've read up on...NO CURE for..." + (show)
Profile picture for kayejen @kayejen

@ray666 Hi Ray - and NO CURE! as far as I've read up on...NO CURE for PN. The nerve endings are dying in certain areas of the body and that could be any area. But, for some reason, people refuse to believe that there is "NO CURE" for this horrible disease. A person with PN just has to have a neuropathy pain doctor to help them find some prescribed pain medication that will help them with the terrible pain. And, Yes and please, LET THE RESEARCH CONTINUE!

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Hi, @kayejen
In spite of there being no cure, I do encourage all of us with PN to make the most of Connect, and for those of us with the sort of PN that gives us no pain but instead plays loose and free with our balance, I, personally, pay extra attention to posts that encourage exercise. I have a PT coming to my home weekly, and I have an at-home routine on do on my own, but I'm like so many of us: I take inspiration from the others who are exercising hard either to stop the progression or to diminish the ill effects of their PN-induced difficult balance. So often I'll finish reading someone's post and hop onto my recumbent bike or grab my dumbbells for a little upper body work. I love a good exercise influencer! 🙂
Cheers!
Ray (@ray666)

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