What are the most recent treatments for Large fiber neuropathy

I originally thought I had small fibre from what my doctor told me and my stomache sunk when I found out (officially diagnosed) what Large fibre is. Muscle atrophy, weakness, loss of proprioception, loss of mobility as it attacks the motor fibres. My feet are deformed because of the motor nerves effected. I’m certain due to my age this is going to fully cripple me as I can barely walk now due to the deformity and the toes not co-operating. Then theres the ulcers that can develop from sensory damage that can lead to amputations. That is some serious stuff and really makes me wander if anything can EVER be done for this. Problem is there really isnt much research being done and the meds available only sometimes help the pain for some. Since this is the Mayo board I wander if there is anyone who works for Mayo (doctor, neuro etc..) that could hop on here and expand on research etc…

This week is Peripheral Neuropathy Awareness Week…this disease needs more advocating and research. It really is a terrible disease.

@megidigo I am hopeful this will become available in coming 1-2 years in Montana. I thought that previously winsantor was working on early compassionate access which is different. Montana’s Right to Try removes continued need for government approval which is required under Early Compassionate use and removes the requirement that you have to have diabetic neuropathy. Let's hope this becomes available.

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)

I also have resorted to vigorous exercising and stretching to try any offset my symptoms. It is a daily efforts
I find stretching 2 to 3 time a day for 15 to 20 minutes very helpful. This in addition to exercising 5 to 6 days per week.

@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!

No that wasn't me.

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 🙂

@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!

@bjk3 Hi, Barb

So you were able to learn from the results of your EMG and other tests that your PN is large-fiber. Or you say "long-fiber.: Is long-fiber and large-fiber the same thing? As I think my post mentioned, I have never been given an "official" large-fiber diagnosis. I concluded that mine is by a process of non-clinical elimination: all of my symptoms point to large-fiber.

You mention "painful hands," but that may be carpel tunnel, related to PN, perhaps, but also in certain ways disassociated.

Words worth repeating, eh? "Quite a puzzle!" 🙂

Onward and upward!
Ray