Living with Neuropathy - Welcome to the group

Hello @ddotnejtleo, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm wondering if both you and @kevinking might find some helpful information from other members in the following discussions:

-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you thought about seeking a second opinion or help at a major teaching hospital or health facility like Mayo Clinic?

Hi I’m jo. I’m having problems with driving and neuropathy. Can I drive?

Hi Jo @jo27, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have idiopathic small fiber peripheral neuropathy and I'm still able to drive. I think a lot depends on your ability to feel and manage the gas and brake foot pedals. There are a couple of other discussions you may find helpful.

-- Driving with neuropathy: https://connect.mayoclinic.org/discussion/driving-with-neuropathy/
-- Anyone use a device to allow driving without foot pedals?: https://connect.mayoclinic.org/discussion/device-to-allow-driving-wo-using-foot-pedals/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your neuropathy diagnosis and how long you have had neuropathy?

As ever John you are a wealth of knowledge! I still have trepidation driving with numb feet, but getting more use to it anyway. I’ll definitely read through the info on the driving discussion though.

My vehicle has radar cruise control…so helpful, you set it however many car lengths behind you want to stay and the speed. It automatically slows down if you get too close. Much easier on one’s feet and legs.

Thanks @athenalee, The adaptive cruise control is the cats meow 😸 I have that on my vehicle too.

Hi group and John, still not sure what type of neuropathy I have but it sure does not belong here. I have terrible pain in my hands that last until the gabapentin kicks in, which sometimes seems forever.
I have pain in my feet and face also, I John got out of rehab, and I am learning to do things on my own, not easy, but has to be done, I can only get around with walker or wheelchair. I usually feel the best laying in bed, but as soon as my feet hit the floor, the pain starts. I am hoping you can give me some info and encouragement because I am running out. Thank you in advance.

Hello @dollie, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am happy that you have taken the first step to helping yourself become a better advocate for your own health. The more you can learn about your condition, the better questions you can ask of your doctors and hopefully help them determine the best treatments for you.

There is another discussion you may want to read through and learn what other members have shared helps them. I also posted my story in the discussion - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

The Foundation for Peripheral Neuropathy has some complementary and integrative therapies you might find helpful here - https://www.foundationforpn.org/living-well/integrative-therapies/

You mentioned you are on gabapentin now for your neuropathy pain. Have you tried any alternative treatments or therapies?

So, I'm 72, live in Oregon and was in relatively good shape until two years ago when I woke up one morning and my left quadriceps didn't work. everything else was fine and there was no pain associated with this. I just couldn't raise my foot off the floor by lifting my leg. We took a quick trip to the KP Urgent care where we were sent directly to Portland Neurosurgery Center. After a thorough work-up, it was a small bleed on my lower spine. They kept me there for 5 days, pumped in steroids and sent me home. Since then, I've recovered about 80%-85% of the quad function, and I'm OK with that.
Then, six months later, I begin to notice a gradual loss of control on both legs. Restless leg twitches, nighttime leg spasms, slow loss of sensation on my lower leg surfaces. Still, no pain. The spasms have gradually gotten stronger, but really only at night. But when walking I feel like I am like a 2-year-old, just learning how to walk. There are some balance issues but no vertigo, of course every med I take warns about that. And again, no pain. My feet are are pretty well numb to touch, but not completely and not all the time. A1C is about 6.1.
I try to exercise/walk 1-2 miles a day and sometimes that seems to help for awhile. But the progress has continued slowly downhill. Dr. says "Idiopathic Neuropathy", no cause, no cure. Tests say it's not MS or ALS. And that is about all I know. They may be a family history as both my Mom and Dad had something similar in their 70's. They both passed from coronary complications of lifelong smoking (heart attacks).
That's my story and I'm sticking to it. But I would like to know if there is anything reasonable I can do to slow/arrest the downhill slide.
Thanks.

@qvt, Do your doctors think your symptoms are all related to the small bleed on your spine? Did they mention Spinal arteriovenous malformation (AVM) as the diagnosis? Here's some information from Mayo Clinic about Spinal arteriovenous malformation (AVM): https://www.mayoclinic.org/diseases-conditions/spinal-arteriovenous-malformation/symptoms-causes/syc-20355613

I did not find any discussions related to a spinal AVM but there is a discussion on AVM, which I recommend at least giving a look here --- Arteriovenous Malformation (AVM) Survivors and side effects: https://connect.mayoclinic.org/discussion/arteriovenous-malformation-avm-survivors-and-side-effects/

You also can find more information and resources on this page --- Arteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Arteriovenous-Malformation-Fact-Sheet

I just started following this group. I am a 76-year-old male and think that I might be experienceing symptoms of neuropathy in my feet based on my 57-year-old son's extreme symptoms. He has had this for 10-15 years already and it has been a long painful expensive diagnosis.

I am wondering if I should start with my primary care doctor or see a specialist now since I am very close to Mayo Rochester. Also what specialty department treats this condition?
I don't want this to get out of control if early treatment could prevent it.