← Return to Anyone here dealing with peripheral neuropathy?

Discussion

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

Comment receiving replies
@mickieva

So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been so frustrated to find that my doctors don't really know what's causing it. They've ruled out many possibilities through many tests, but now all I have to work with is PT. Anyone else have this experience?

Jump to this post


Replies to "So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been..."

Welcome @mickieva, You are right about it being difficult to determine the cause of neuropathy. Mine was diagnosed as idiopathic small fiber peripheral neuropathy and then because I only have numbness I was told by the neurologist there are no real treatments to help. That led me to Connect and a whole new adventure of learning from the experiences of other members. I shared my story in the discussion - Member Neuropathy Journey Stories: What's Yours? here: https://connect.mayoclinic.org/comment/310341/

Do you mind sharing a little more about your diagnosis and what type of neuropathy you have?

I struggled with PN for about 70 years before I learned how to deal with it. Then at some point a few years ago I heard that Tercumin would help. So I started taking about a quarter-teaspoon when the crap started. It worked so well that now I take that about every 2nd day, with some water. Now I have learned that I have a couple diseases which add to the problem; FKTN and LGMD2m. NIH says both are Rare diseases, thankfully. One of their sources says there are 8 cases of LGMD2m in the world; I would make 9. Both, then are my family myelomas , thus cancers. Anyway, These two are related to each other by mutation and AR . The mutations seem to occur near birth. Also, Tercumin is a blood thinner, so one has to be very careful. I call this pair, along with dilated cardiomyopathy "Yachats syndrome". My dentist found my problems, and others back up the work..

What does PT do