Hi I just found out recently I had neuropathy

Hello @lynn6578, Welcome to Connect. You ask a great question on what you can do. I would like to give a kick start on your neuropathy journey. The best suggestion I can offer is to keep asking questions while learning as much as you can about your condition and what treatment options may provide you with some relief or comfort. I also have neuropathy and shared my journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Another site I would like to suggest getting familiar with is the Foundation for Peripheral Neuropathy which has a wealth of information on living well with neuropathy - https://www.foundationforpn.org/living-well/.

Do you mind sharing a little more about your diagnosis and symptoms which are most bothersome?

Hi, Lynn (@lynn6578)

Welcome to Connect! I think you'll find that just hanging around Connect, reading others' posts and posting when you have a question or comment to make, is already a big step in learning about about your neuropathy. It certainly was for me!

I'm 79. I was diagnosed in the summer of 2022 with idiopathic polyneuropathy. I'm extremely lucky in that I have no pain. My two-pronged problem is poor balance and the need to be super careful walking from place to place.

I see that Mentor John has already given you a link to the Foundation for Peripheral Neuropathy (FPN). If you go there –– and I highly recommend that you do –– and look under Patient Resources and then under Past Webinars, you'll find links to the dozens of highly informative hour-long webinars the FPN has hosted over the years. I have found that even when a particular webinar's topic doesn't seem all that related to my neuropathy, if I listen, I'll learn something, and usually quite a lot.

Again, Lynn, welcome! Make yourself at home.

Cheers!
Ray (@ray666)

Good evening @ray666. You may want to change the @mention for Lynn to @lynn6578. It is a great response.
Chris

Hi Ray, I was just diagnosed 2 months ago with peripheral polyneuropathy... And am heading down the rabbit hole of tests. May I ask what tests you endured before they gave up apparently and considered it idiopathic?
Thanks

Welcome @justbob, While you wait for @ray666 to respond, you might find these discussions he started helpful on his neuropathy journey.

--- Idiopathic Polyneuropathy: My endless journey to a near-diagnosis: https://connect.mayoclinic.org/discussion/idiopathic-polyneuropathy-my-endless-journey-to-a-near-diagnosis/
--- Axonal peripheral neuropathy: Finally, a diagnosis!: https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/

Do you mind sharing a little more about the symptoms you have along with the diagnosis of peripheral polyneuropathy?

Hi @lynn6578 and Welcome to the group! I think a lot of us were a bit lost and confused about how to deal with our conditions until we found this forum. We felt we were in a rare category and knew of no (or few) others who were going through the journey until this group made us realize that there are indeed many people going through the same thing. Unlike most all of our doctors, people on here live with neuropathy and can share the actual experiences of living with it and finding good tools and methods of coping.

With that said, I’ve realized we all don’t have identical symptoms or levels of capabilities. What works for one person might not work for you. It’s one big trial and error to find the best working solution for you. Search for any direct topics you want to dive into, or just read through the whole forum, or just put your questions or your own helpful hints out here. We are all learning from each other, but it’s hands-on experience.

I was 3 years into my now 7.5 yr journey, pretty much trying to figure things out on my own, before I stumbled upon this group. The biggest encouragement I can give is to work your best to stay ahead or maintain in this game. We all have different levels of activities we’d like to keep up. I’ve been a big proponent of physical therapy. That helps me tremendously. I would love to add Myofascial Release Therapy but haven’t found a qualified therapist close enough. Read around to find many suggestions for specific needs you might have, this site covers a huge range. We’ve got some obstacles to deal with, but this group is trying to figure out how to move forward and adapt in the most positive way we can, and help each other when we might get frustrated!

Hi, justbob (@justbob)

" … what tests you endured before they gave up apparently and considered it idiopathic?"

No time at all! "Idiopathic" was mentioned by my neurologist at the conclusion of my first-ever EMG in August 2022. Before that, there'd been not a whisper of "idiopathic" or "peripheral neuropathy," for that matter. If there'd been any delay, it was only a matter of 2-3 minutes –– 2-3 minutes I found very strange and a bit alarming. When the neurologist had taken his last reading and snapped off his machine, instead of coming straight to him to share the results, he drifted away and stood by the window, watching, I thought, the evening rain. When he finally came back to me, that's when he said, "I've good news and bad news, Ray. The good news is you haven't got something more serious. The bad news is that what you do have is serious but less so. What you've got –– because we can't point to a cause –– we call 'idiopathic peripheral neuropathy'." So, you see, justbob, I got all the discouraging news in one fell swoop. 🙂

Ray (@ray666)

If you drink alchohol....STOP!! and read up on the drugs they give you.They are not God!! I have refused 3 this year alone.When i call prescibing Dr and tell them the script made it worse,they just say"ok,quit taking them".

Hi Ray,
Thanks for getting back. Thus far, my "numb/no pain" feet (large fiber peripheral neuropathy) have drawn a diagnosis of diabetic neuropathy. The conclusion was fairly promptly reached based upon an EMG and a blood glucose test. However, given an A1C of just 6.0 (slightly pre-diabetic as are about 50% of the US population over 65), not at all overweight, cholesterol good, blood work so far ok, I am not yet convinced. Curiously, if one were to use the World Heath Organization's standard of 6.1 instead of the CDC's 5.7 as the beginning basis for pre-diabetes, I wouldn't qualify.
Maybe in denial, but I gotta be 110% convinced that the diagnosis is correct if I have to live with this forever. So, down the rabbit hole I go looking for answers that may never truly come. Given that they say there can be over 100 causes for neuropathy, it may surely be an insurmountable endeavor.
Regards.
Bob

Hi Ray, I have the same issues with idiopathic PN. Numbness, tingling, however the worse is balance!! I also must be very careful. My dr. had me on amitrtaline which after 4 months and nothing different except 8lbs heavier, I stopped taking it. It is mainly for pain, which I do not have. I have a vibrating platform, which has a handle(like a scooter) and I also bought slippers with the red light therapy, I exercise -4 days a week. With everyrthing combined I believe I am holding this numbness at and tingling from worsening. The balance has improved with the red light therapy. I have had 3 MRIs on spine and seeing a neurosurgeon to see if PN can be stemming from back, which I under
stand alot of this idiopathic PN stems from. We shall see. Keep posting any relief and balance issues if improving. Good luck to you.