← Return to Living with Neuropathy - Welcome to the group

Discussion

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)
Comment receiving replies
@pfbacon

I've been told that my nervous system is dying, that there is nothing to reverse it, I have accepted it, even though it's 'not fair'. I just retired a few months ago and was planning to go to France to look up the little town that my father's family came from (Vance). Instead, I'm getting my affairs in order. There is relief in this too -- at least I won't live so long that I run out of money. In this group, I have read posts from people who have been struggling with neuropathy for years - years! Mine is advancing so rapidly that I'm soon going run out of medicine. The politicians in the state I live in have declared that our medicines are 'controlled substances' and they are making it harder and harder for us to get it -- they have even empowered pharmacy clerks to withhold our medicine from us if there is anything 'suspicious' (?) about it. Peggy

Jump to this post

Replies to "I've been told that my nervous system is dying, that there is nothing to reverse it,..."
John, Volunteer Mentor | @johnbishop | Nov 8, 2018

Hi Peggy @pfbacon, I listened to an 80+ year old neurologist at a meeting a few years ago for the Minnesota Neuropathy Association and one of the things I found interesting was a statement he made - everyone gets neuropathy sooner or later if they live long enough. Some of us just happened to get it sooner and we learn to live with it. I was told the same thing when I was first diagnosed with idiopathic small fiber peripheral neuropathy - nothing we can do, just let us know when it gets worse. That's basically why I did some searching and found some over the counter supplements that help some with the numbness. They definitely do not cure the PN but they do seem to have slowed or stopped the progress so I'm good with that. I only have numbness so I don't have to deal with the pain that most others with neuropathy like yourself. Others in the closed Facebook group I belong to have found relief from pain and have been able to taper off of medications and only use the supplements. I don't know if it will work for you but if you don't have access to what has been helping you it might be worth trying. They have a website that provides the link to their Facebook group - http://solutions2pnpd.com/.

I may have shared my story with you earlier but if not here is a link to the post:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Wishing you peace and strength in your journey with neuropathy.

John

VIEW AND REPLY