Living with Neuropathy - Welcome to the group

Goodmorning, suchadoc. I hope you don't mind me jumping in here. Thing is, I relate to so much of what you are saying regarding balance and gait. Sometimes I get a sharp pain in my metatarsals, legs, hips joints, and so on, that gives me a jolt that makes me feel I may go off balance. And sometimes I walk upright like a healthy, pain free human, while other times I can barely walk at all from the pain. I feel like my hip joints are locking up on me. I have definite nerve damage and it's getting worse. And i don't have an official medical diagnosis, yet. And the reason is, I live in a small town and would need to travel 220 miles to a nerve doctor. I help myself survive by carrying a roll on pain stick with me and use it often when I go shopping. I also just recently started with a PT. It's too soon for me to say if it helps me physically. But I believe it will and that's half of the battle won. I'm getting a prescription for 5% Lidocaine transdermal patches. The reviews at Amazon are good and I believe they will help: the roll on pain relievers do somewhat. Please forgive me for going on and on, but let me say, I pray we all find relief from the agony of this painful existence. Best, CB NOTE: I forgot to mention, in Dec 2022, I went to a foot doctor DPM when the neurophy was in my metatarsals. He diagnosed me with Radiculopathy (referred pain from my back to my feet).

I am wheelchair bound, having had polio in 1945 and finally becoming tired of holding myself up with one Lofstrand, then two Lofstrand canes...eight years ago. In 2020 I began having intense itching on the soles of my feet at night (feet elevated due to daytime swelling from not walking anymore).
Three MDs not having a clue, I now take responsibility for my foot weirdness such as taking turns with heat-and-itching and icy-cold, one foot red and one blue ... then switching off to the opposite foot a day or two later.
I have tried the basic gabapentin-type medications and found myself on the floor unable to get back in the wheelchair.
I bought a small freezer to place next to the recliner I sleep in to keep home-made ice packs to change out during the night, take no medications for the condition; and am researching food allergies such as peanut butter and tomatoes, and adding cinnamon and black pepper to my intake.
Once every month or so I may have one 8-hour day of relief; this month I had 5 days and nights free of symptoms. Thinking I'm on to something gives me hope!

Welcome to Mayo Clinic Connect. You have come to the right spot for information. Folks are great to share their experiences. Neuropathy is horrible. I watched my late husband suffer with neuropathy and Raynaud’s syndrome.

Thank you very much. I look forward to working myself through this many entries.
Georg.

I have been diagnosed with generalized sensorimotor polyneuropathy. My neurologist has done a comprehensive workup lots of lab, MRIs of total spine with no answer. I was in Viet Nam some 50 years ago I am wondering if agent orange might be involved. Any one have any experience or thoughts on that?

Welcome @pacarnut, You are not alone with the agent orange neuropathy side effects. Here's a link to comments by other Vietnam vets on the topic - https://connect.mayoclinic.org/search/comments/?search=agent%20orange%20+neuropathy.

The VA also has a public health article on the topic here
-- Peripheral Neuropathy and Agent Orange: https://www.publichealth.va.gov/exposures/agentorange/conditions/peripheral_neuropathy.asp

Are you being seen by the VA doctors or neurologists?

My feet and legs are becoming numb , as well as my arms.

Welcome @mlmbhsrnpb3, I see from your earlier posts that you have tried red light therapy and it helped some and you also mentioned the doctors thought you had IBS. Have you been diagnosed with a form of neuropathy?

Not specific but caused by stenosis in the spine.

. I’m here to… sometimes, like this, I write longer than other folks. Well, it’s here… 🙂

12 years ago I had a bicycle accident that caused me a TBI. I lost 80% of my brain… think about a good or bad changes.

Alright, pass my TBI is here on the pain in back my legs & lost of feeling on a big part from my feet. What do I do? My unbalanced has killed my things like walking outside with my doggies, a few times a week; cutting grass - front & back for a 2.5 hour per week; fixing/cutting/cleaning bushes and other things inside or outside…

Why did it fall my rear ends in our garage for wooden steps? That killed me 2 years ago and lost my physical things that I did. 4 weeks ago, I had a (losing the word, daggone) surgery (finally) from my top of 1 rear end and to the bottom of my back. My Doctor A. had a choice for me: (1) add some meds that, maybe could help me to get rid of pain >or< (2) seeing the pictures of what he could - one little part of my (daggoneit, losing the next word coming) large nerve right between the two L6-L7 (sorry, I can’t k ow the L something) and moved that nerve out from my back part. My pain is gone! Now, I try to exercise from my rear end to the bottom feet… stretch, move from one part to the other..

Yes, no pain, but fix my lower body. ❤️