Living with Neuropathy - Welcome to the group

Thank you for the help. I’ve been living with neuropathy for 9 years no post massive stroke. I was making some progress with chiropractor who used red light therapy, oxygen infusions,and a rebuilder but then COVID.

Hello @cblythe, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There are a couple of other discussions you might find helpful to learn what other members have shared.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- THE REBUILDER for peripheral neuropathy: https://connect.mayoclinic.org/discussion/the-rebuilder-for-peripheral-neuropathy/

Are you able to share a little more about your diagnosis and symptoms?

John thank you for your response. I am so technically challenged… So I just go to the neuropathy pages and click on the “last” and hope I catch the new ones. There’s so much information on this site.
I have a problem I don’t read much about my feet occasionally get hot but usually they are cold. Coldness started about a year ago in the tips of my toes and now cold and numb up to the balls of my feet. It’s causing me to lose my balance. Also my legs are getting weak and for a while I developed plantar fasciitis but have corrected that with wearing splints at night and changing my shoes. Anybody else have cold numb feet? And does the neuropathy cause weak legs?

@burningfeetinphoenix
@kansasgal
The above members talked about 10%Phentoin cream. (Phentoin is a seizure medication. I have heard some people get relief from it. It has to be made at a compounding pharmacy. Hopefully they will let us know how it’s been working.
Jake

Yes, I tried the Phentoin cream and sad to say it did not work for me. But, that doesn't mean it won't work on someone else. Good luck in your journey. Kansas Gal

@kansasgirl
Thank you for replying!!!
Jake

Chris, I am really only interested in recent information about neuropathy. If that’s not possible I can sort through the messages and find what I need. I appreciate your concern. I really appreciate this website.

My dad developed trigeminal neuralgia and he also thought it may have been a result of a MOHS surgery on his temple. He is under the care of a neurologist and the medication he is on relieves the pain but makes him sleepy. Good luck!

Hello @jetsetter and welcome to Mayo Clinic Connect. Thank you for joining and connecting with @bloufitz when you noticed a similar experience to that of your dad's.

Can I ask how long ago your dad developed trigeminal neuralgia?

Good evening once again. I am sorry I was unable to give you what you want. I think it is time to ask @johnbishop to share the links to the sites with the latest information including national organizations and his favorite Google Search.

As you are probably aware, there is currently no cure for neuropathy. And sometimes there is no cause to be identified. ....And there are reportedly more than 200 different types of neuropathy. We try to mitigate the pain, the numbness, the tingling, and any other symptom that rears its ugly head.

I have had diagnosed neuropathy since 2013 when surgery and fusions in the cervical area were attempted to try to relieve distressing and debilitating pain in my arms, wrists, and hands. I now have two sessions of MFR. myofascial release therapy, every week to keep me walking without assists. Medical cannabis is my only choice for pain control.

I think that John will also warn you to avoid falling for the scam artists that prey on our desire to find a solution.

How long is "recent"?

May you have comfort and contentment.
Chris