Living with Neuropathy - Welcome to the group

I've had complete numbness of the entire right side of my face including the inside of my mouth and tongue for the past 34 years. I had MRI's which have not shown any tumors or compressions. I was told back in 1988 that the cause was the result of the herpes virus that attacked my trigeminal nerve.
The numbness has recently gotten worse. Medications do not help. I am searching for people who have the same problem and maybe a solution.
Thank you.

Hi @brian29, Welcome to Connect. There is another discussion you might find helpful for connecting with other members with similar symptoms.

-- Trigeminal numbness: https://connect.mayoclinic.org/discussion/trigeminal-numbness/

I was diagnosed with Neuropathy in 2008. Numbness creeping up my legs, but the pain in my left foot dictates how much I walk. In the last three years, I've gone from walking a mile every other day and freely walking our house to measuring my steps each day. I'm on medical cannabis - pills, salve, and vaporizer (inhaler / ecig) and Lyrica. I use three different massagers for my foot. I take a motorized cart whenever possible. I've tried Gabapentin, but the cannabis,
Lyrica, and leg/foot massages help me the most. My dad had this and my brother has a very mild case of neuropathy. I'd appreciate any tips, treatments, or exercises that have helped others. Thanks!
Andy

Hello @andyoman50, Welcome to Connect. Sorry to hear you haven't found much that helps with your neuropathy symptoms. There are a few other discussions you might find helpful.

-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
-- Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

You might also want to look at the information provided by the Foundation for Peripheral Neuropathy -- https://www.foundationforpn.org/living-well/

Have you made any lifestyle changes to try and help your neuropathy symptoms?

I noticed that you said your brother and father have similar symptoms. That is true in my family also. My sister and I have many identical symptoms, but have gone different routes with treatment. My Dad, who is 90 and walks two miles every day, has a lot of the pain, and his father did too, but not as many symptoms as us women.
Because Hudson Alpha Institute is in my town, I went to their Institute for Genomic Medicine. It was nice to have someone help me tie together all the puzzling and overlapping symptoms I’ve had for the past seven years. Sadly, the testing did not show any known genetic markers for what my family has, but they assured me that research is always ongoing, and I could be contacted at a later time with more information. It doesn’t change anything, but it’s nice to know that someone is researching on our behalf.

I posted this question on the site for those of us who have neuropathy that’s unrelated to diabetes. Mine is a result of a mistake during surgery that damaged the intercostal nerve.

I’m asking for information on the highly recommended R-alpha lipoic acid. My primary said YES immediately about my taking it. My question is what is the difference between R-alph and just alpha lipoic acid. I can Google it, but I thought someone might have knowledge and experience.
I’m aware Vitamin E with a dl is synthetic and I wouldn’t take it. Is this similar? Thanks!

@gshfmb, here are a few references that you might find helpful...

-- Alpha Lipoic Acid
http://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid
-- Research seeks to identify the mode of action of two age-essential micronutrients,
lipoic acid (LA) and acetyl-L-carnitine (ALCAR)
https://lpi.oregonstate.edu/research/hap/aging-stress-response-and-mitochondrial-decay
-- (R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging
https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/
-- Insights on the Use of α-Lipoic Acid for Therapeutic Purposes: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6723188/

Thank you so much. I’ve ordered the R-alpha lipoic version. I’m having it delivered to our closest Walmart. I know it will be here September 8. I stopped at a Walgreens and they couldn’t find it. 🙏🏼🤷‍♀️🤩. Appreciate your help!

I have had symptoms of peripheral neuropathy for the last 5 years. Recently they have worsened and driving has been a challenge for me, so much so that I’ve stopped altogether, except for an occasional short trip to the grocery store.
I am trying everything that I can think of , bought a sand dune stepper, massage gun, am starting PT soon, walk at least 5 days a week and am doing some balance exercises.
I opted not to take the meds that are usually prescribed, as I don’t really have pain, it’s mostly the numbness and loss of sensation when sitting or lying down.
Anyone out there have similar
symptoms or solutions that worked for you?

Hello @jalcorn, Welcome to Connect. You are not alone. There are a couple of other discussions you might want to read through.

-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
-- Anyone use a device to allow driving without foot pedals?: https://connect.mayoclinic.org/discussion/device-to-allow-driving-wo-using-foot-pedals/

I have the same concern and also purchased a Sand Dune Stepper to see if it would help but I haven't used it for awhile. I do think it helps with my balance and it definitely feels good on the feet. I am still able to feel the foot pedals but I am always thinking the day will come when I will need to stop driving.

Have you looked into hand controls for driving?