What are the most recent treatments for Large fiber neuropathy

@suetex Hi, Sue
I'm deeply sympathetic to all of us with PN, no matter the "breed" of PN, but there are times when I feel that those of us whose only symptom is a wobbly gait are part of a small community within a much, much larger community.
Cheers!
Ray (@ray666)

@ray666 Hi, Ray,
You have me in the research mode here (which is a good place to be when there doesn't seem to be a lot of outside help). Putting the specific muscle fibers measured into quotes from my diagnosis: ""Right peronesis longus muscles" and "Left peronesis longus muscles", these indicate long-fiber (elongated shape rather than large) according to verywellhealth.com, one of several websites which offered an explanation of the distinction between long and large fibers. Here's the real kicker: according to this and other websites, these longus muscles are responsible for the "crucial role in foot movement and stability" and state that (in layman's terms) dysfunction of these long-fiber muscles lead to balance and gait problems. Hmm...movement, stability, balance, gait...ring any bells?
As to the Carpel Tunnel, that diagnosis was made by separate EMG testing, and the Occupational Therapy I received was incredible. I am confident that I will never even have to make the decision to have surgery if I just continue with the tools and instruction I was offered. In any case, I just couldn't, living alone and hoping/planning to stay that way.
Let the research continue. Peace, Ray~
Barb

@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.

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.

@bjk3
My body will not tolerate Pregabalin well. Do you have side effects? I have been taking for 5 months and the fog, weight gain and water retention has not improved. Cymbalta worked well but I have tremors that are mild on Cymbalta they are intolerable.

@ray666: I couldn’t help but reply to your inference to “people who don’t post probably don't feel pain.
Well, I may be the only one to disagree, but I read the Neuropathy posts and have tired of the constant “new & improved cures” or another appliance to buy that relieves the rambling pain we all are quite familiar with.
It’s been over 30 years of traveling this road searching for permanent Neuropathy relief. My experiences taught me there is no “CURE” for Neuropathy. There are a zillion temporary aides and more invented daily, but I have formulated a fact that they only offer temporary pain relief. Pain drugs are necessary at times for extreme discomfort… but I choose to limit their use to one or two days for my fear of dependency.
We all have the gift of free choice in our approach to this disease. This is only my 2cents & many will say that is an overstatement! 🙂

@jniz
I'd say you summarized the side effects of Pregabalin to a "T". I am sorry that you, too, are experiencing these addendums to the initial assignment (of trying to find a successful treatment) of alleviating pretty constant pain. I've been prescribed Pregabalin for four years along with Tramadol, and wondered which of the two was the culprit for said side effects. Over this last winter, I have successfully discontinued the Tramadol, having taken only one tablet since March. I have tried a number of times to cut back on the Pregabalin but the pain is excruciating if I'm late with the next dose (2 - 50mg. capsules every 8 hours) by as little as two hours.
I wish I had better news or even suggestions but everyone's body chemistry is unique and so the combination of trials to find relief seems infinitesimal. Big word, there - ha...glad for autocorrect. I'm so grateful for this forum, though, where we can ask questions and hopefully narrow the unending search for our best individual approach.
Peace,
Barb

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

@dbamos1945 I agree. I'm also guilty (if "guilty" is the right word) of not posting because of an occasional "Oh, why bother?" sentiment. As a no-pain PNer, I'll sometimes tell myself: Get offline, Ray, and get some exercise. Exercise is the only thing that may (operate word: "may") help better your balance. In fact, that's why this topic caught my attention. As fully as I've accepted there's little (at this time that can be done to "fix" no-pain PN, there's still a corner of me that whispers, "You never know … " 🙂 –Ray (@ray666)

@wststanley

Thanks for the information. However I have no way of knowing if your Stanley Kim and not some random person. I would have thought you would have a made a post to the first entire board though not just me buried within a thread.

I actually have tried to contact you via your website, company phone number and email and have never received a response so my gut tells me this is not Stanley Kim.