Living with Neuropathy - Welcome to the group

Hi @rghendricks, Welcome to Connect. Thanks for being an advocate for your dad and helping him find some relief. There is another discussion that you might want to read through to learn what other members have shared helps their neuropathy --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here are a couple of sites that I have found helpful in learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy - Treatments: https://www.foundationforpn.org/treatments/

Are you able to share any information about your dad's neuropathy diagnosis and any treatment that he's tried?

Hope it works but I think we are targets for scam medical quick cures. Be well, Jules.

Agree...desperate folks, in pain, discomfort etc...are sitting ducks for the gimme $ for this miracle cure etc...Better to expend energy contacting your local, state and national representatives to stimulate research, science etc..Hang tough, exercise, keep moving.

A blessed Friday from me and yours great city HOUSTON TX.
Will add …. CELEBRATING THE FAMOUS HOUSTON RODEO…. Ending in a few weeks. Hoodie there.

I thank you Colleen and team for the great platform. Will shim-me in to reply and seek the information needed.

Am Carlos Sierra .
Am 57
Diagnosed in 2016 with neuropathy of both feet. Painfully affecting all I do.
Add neuro on my hands since 2020 to a point is notable I.e those around me included. You know what I mean . I hope.
Currently on 2 DAYLY 3 x DRUGS. ( TESTED TO BE of help …. Have stopped reading the primary use. Or senc effects
HERE IT IS

• CYMBALTA 60x4-5 DAYLY
•OXCARBAZEPINE 600x 4-5 da
•ADVIL 200x 4 da
•TYLENOL 500x 4 da

have I tried over the counter for months and on most now.
TEAS, VITAMINS… cdt oils, no beef, Lots to stretch, messages, and lots of TERRAW VIBRATIONS... Love it. as I genuinely think it decompresses.

Do reply

I remain

Welcome Carlos @carlossierra1287, I was also diagnosed with small fiber peripheral neuropathy in 2016 except I had neuropathy 20+ years before trying to have it diagnosed. I think mostly because I don't have any pain with my neuropathy. I only have numbness and a little tingling. I posted my story and what has helped me in another discussion here --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

The Foundation for Peripheral Neuropathy has a list of treatments that you might want to compare with what you've already tried to see if there are others you might find helpful - https://www.foundationforpn.org/treatments/

What symptom do you find to give you the most problems?

I am not sure what type of PN that I have but I do not have diabetes and I am pretty sure that back and neck injuries from my time in the military have played a part. I was diagnosed with PN and radiculopathy in all four extremities before I retired. This initially presented with numbness in my right foot that seemed to be a Morton's neuroma. Over the last few years my feet have become more and more sensitive to walking/standing and shoes. Recently, I have had much more trouble sleeping due to tingling and electric pain in my toes. For about a week, I had extreme hot foot syndrome. Some research and blood tests led me to B12 injections, and it helped alleviate the worst of the tingling, electric pain and hot feet, it isn't gone, and it may be coincidental, but I'll take it!
I often have the sensation that my legs are weak, but I don't think I have lost strength...
This last week I have requested a neurology consult since I haven't seen one since I retired 6 years ago.
It has really become a problem and I am trying to understand this progressive disease.

Motor nerve damage can cause leg weakness. I had that symptom due to documented motor nerve damage after the Covid vaccine. I also had sensory nerve damage, which caused nerve pain. Fortunately, I'm recovering. I hope your neurologist can help.

My name is Sandy Resler. I am 73 years old and until this neuropathy increased about 5 years ago I was quite active. ... I was diagnosed by a neurologist at UW. He sent me back to my primary to manage my meds. Because I see a pain Dr. in Rockford for another issue I asked him to take over my care. His name Is Dr. Thomas Dahlberg. My current meds are Gabapentin 600 BID, Lyrica (pregabalin) 100mg TID, Ropinirole 1mg Bid, Furosemide 40mg BID, Potass Choloride 10 MEQ ,1 BID, Lisinopril 10 Mg qd, Escitalopram 20mg qd Zolpidem tartrate 1 tab 12.5 mg at hs. I also have a morphine pump that is being titered down. I am not able to walk more than a Homegoods Store. My feet and legs are swollen and they keep me up every night. I've been sleeping in a recliner most nights, wearing compression hose all day. I would like to know if my meds are adequate or if there is something else that would work better. Thank you, Sandy

Hello Sandy @casandra73, Welcome to Connect. Unfortunately I think only your doctor can answer your question on if your meds are adequate. Members on Connect, like youself, are patients and can share our personal experiences with medications and treatments but can't diagnose or provide medical advice. I also wear compression socks during the day to help with the swelling during the day and for the most part they do keep the swelling down.

Have you thought about getting a second opinion and having your medications reviewed at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hello all, thank you for having this forum available. I have a very challenging and stressful job (I hold a senior position within the UK government), and I have just broken up with my partner of multiple years. Growing up my father had bipolar and my parents became divorced. When my mother remarried, my step father was an alcoholic. My eldest sister developed schizo affective disorder and it pained my family and I to observe her have multiple nervous breakdowns. As a result of my personal circumstances, I became drawn to friends who had similar experiences to mine and this resulted in share alcohol and drug abuse. I haven't been diagnosed as yet but I have looked up online and I think I have peripheral neuropathy in my hands and it's likely it was brought on by me battling my addictions. I am dealing with detoxing and steering clear of toxants now but I just wanted to reach out and see if anyone had any experiences like mine in terms of neuropathy, brought on by the aforementioned means. I hope that you will not look down at me in my post as I am here because I am quite frightened and am looking for some reassurance, please. Thank you