Living with Neuropathy - Welcome to the group

Always looking for other’s experience andinput. I am rnwings.

I am wondering why PN is not addressed by most MDs but so many people have it. Very discouraging to deal with it and know not many others forthcoming with having it…as it is much more common these days. I am 78.

Hello 👋
I was just diagnosed with PN in April of 2023 .
They were and still trying to figure out why I have unbalanced walking.
So they done a Eng nerve test and yea i have Neuropathy.
But before all this started i was feeling like something was going on with my feet and calves because I stand 10 hours a day working in a bakery 🙃.
But by the time I would get home my legs felt like they had concrete blocks around them. I shunned it off of course and then started having cramps in my feet and legs at night .all they said prior was drink more water 💧 😒
But I almost passed out at work and then all the tests started.
They say I have vestibular Hypofunction vestibular and severe osteoporosis and Neuropathy.
I haven't started taking any meds yet but I have been prescribed Gabapentin 300 1 at night .
But I was a pharmacy technician for 13 years and I know the side effects.
So I'm waiting. I'm 59 years young.

Welcome @rnwings, It can definitely be discouraging dealing with neuropathy. I think I asked the same question of a few of my primary care docs since my late 40s when my toes first started tingling and feeling a little numb. My docs had always shrugged it off as nerve damage and as long as I had no pain there wasn't anything that could be done. It wasn't I was around 75 that I finally decided I had to know what my diagnosis was and got a referral to a neurologist. I shared my neuropathy journey story in another discussion here along with other members - https://connect.mayoclinic.org/comment/310341/ along with other members.

The good news is that it can be difficult to live with but you have a lot of company here on Connect where you can learn what has provided some relief. Lots of different discussions in the Neuropathy Support Group that you might find helpful. Here's a list if you want to scan through them - https://connect.mayoclinic.org/group/neuropathy/

What's bothers you the most with your neuropathy?

I thought I had Trigemninal Neuropathy, I have all the symptoms except I don’t have a lot of the facial pain, but I have complete numbness on the right side of my face which also include all upper and lower teeth, roof of my mouth and top of head and scalp and includes shooting pains. I was on Gabapentin last year for about six months but then I wanted to see how things would feel if I went off it, so I weaned off it. I couldn’t deal with the dizziness, brain fog and memory issues I was having while being on it.

My MRI showed no enhancement of the Tri, nerve, SInce I have an autoimmune condition my Neurologist & Rheumatologist both feel this is a complication of my autoimmune condition and have never seen this before, so treatment is a guessing game. They told me it is probably inflammation and doubt that I will ever get rid of the numbness. I tried. Methotrexate & Mycophenalate & both gave me side effects that I couldn’t tolerate, so I am left with dealing with not knowing, I even had a spinal tap and the the only thing that revealed was massive amounts of a protein called Tau. I do not have Alzheimer’s which they thought could be possible, they literally must have performed 10+ labs to rule out and the only thing was this Tau protein which my Neurologist states he doesn’t believe there is any connection, But, what is it then and why is it abnormally high? Someone he knows at the Mayo is supposed to do some research about it for him, He said I have a rare disease. I was going to try an infusion, but I go sick and they couldn’t give it to me, that is probably going to wait a little bit. THe infusion is only to stop progression but I will still be numb forever so it seems!

I am new to the forum but long experienced with peripheral neuropathy affecting both legs equally the past 15 years due to over use of alcohol. Initially, impacting only both feet with slight numbness, it has progressed in intensity but still sensitive to feeling the car's brake and accelerator. Gradually, the numbness (nerve death?) has extended up both legs to mid-calf but no pain involved. I am 85 years old and concerned with a prognosis impacting my driving ability and physical mobility. Under doctor's supervision, I take one 100 mg stabilized R-Lipoic acid tablet and one super vitamin B-complex daily that seems to ease numbness and slow advance. A host of Facebook ads tout a variety of "miracle cures" that tempt me but are resisted. This site confirms that most are scams. Successful treatment is rare and highly variable per individual. Is there hope for some future, effective treatment?

Hello @dgjestson, Welcome to Connect. I am 81 and on my way to 82 this April. My story is very similar to yours. Progression and driving have been my driving force (no pun intended!) to learn more about anything that can help slow, stop, reverse my symptoms since there really is no cure. My greatest hope has been stem cell therapy but I don't think it will happen in my lifetime. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy also has a list of supplements that have shown to help neuropathy. The list is included in their document Complementary and Alternative Treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Hoping you have great 2025 and continue to keep your neuropathy at bay! There are many members with neuropathy experience here on Connect that have shared what has helped them. Searching is really easy here on Connect. Have you tried using the search function on Connect?

Thank you John, your response was helpful. I have not discovered the search function yet but will pursue that right away. It's very clear that I have a lot of research ahead of me and I recognize I have to be my advocate to find solutions. I will continue to keep my primary care physician in the loop!

Good morning, dgjestson (@dgjestson)

Your history and symptoms match mine almost to a T. I'm 79 (soon to be 80). I also was a drinker, but since I quit well over 30 years ago, my drinking has never been positively linked to my PN. Mine is large-fiber, so no pain, but bothersome balance. My feet, like yours, are still sensitive to my Jeep's pedals; however, not wanting to wait until there is a progression in my PN, I'm right now looking into getting trained to use hand controls. I aim to get certified and have the controls onboard by early March as a sensible driving alternative.

My very best to you!
Ray (@ray666)

Thanks for the note Ray. I live in Wisconsin where beer drinking is a way of life! With an alcoholic father, I was very cautious with alcohol (excluding 4 years of college debauchery) and falsely thought "having a few beers" daily was no big deal. It wasn't until I was in my 60s that a new family doctor noted that I had alcohol in my system about every day for 40 years! Neurological problems followed soon after. I think society along with the medical profession have been sorely neglectful in not identifying the clear impacts of long-term alcohol use on the body beyond liver impacts by alcoholics. Worse, Wisconsinites brag about "being number one in alcohol consumption!" Good luck with your hand control training. Sounds like you are seeing your neuropathy symptoms progressing to the point of limited mobility. You are to be commended for staying upbeat and doing what you can to keep quality of life sustained!