Whats my future?

Hello @petr, Welcome to Connect. Great question and I'm sure we have all thought about what's my future if we haven't actually asked the question. Finding what helps you manage the symptoms is the key for most of us to live well with neuropathy. There really is no cure although there are plenty of companies out there selling questionable products offering a "cure". It's up to each of us to be our own health advocate and learn as much as we can about our condition and what treatments are available that might help. I shared my neuropathy journey in another discussion here along with other members - https://connect.mayoclinic.org/comment/310341/.

If you haven't already seen the Foundation for Peripheral Neuropathy, it is full of good information on living well with neuropathy along with other patient resources. They also have a great collection of videos/webinars on their YouTube channel.
-- Living Well with Neuropathy: https://www.foundationforpn.org/living-well/
-- YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122

You might also want to take a look at other discussions in the Neuropathy Support Group here - https://connect.mayoclinic.org/group/neuropathy/.

Do you have pain with your neuropathy or is it mostly numbness and tingling which is what I have?

thank you. I have some pain but mostly numbness and balance issues and hammertoes etc. I will definitely read the info you suggested.

Hello, petr (@petr)

We've got a similar situation. I'm 79 and have idiopathic PN – no pain but difficulty with balance and gait – diagnosed by EMG in the summer of 2022. I can trace my symptoms back to ca. 2012 when I first noticed brief (10-15 min.) episodes of walking-about wobbliness. These episodes were so brief and unthreatening that I paid them no mind; never even mentioned them to my primary doctor. By 2020, however, the episodes had grown longer in duration and were beginning to have a bothersome effect on my lifestyle. That's when I saw my first neurologist. Here we are now in 2024; my symptoms, though perhaps a bit more troublesome, remain the same (no pain but difficulty with balance and gait) and have not markedly progressed. I've little to attribute that 'good news' to, other than diet and exercise, predominantly balance exercise. I thought I'd mention my situation, one, to tell you of my near-matching set of symptoms, and two, to assure you you are not alone in this maddening business of dealing with PN.

Cheers!
Ray (@ray666)

@petr - Oh boy, did you bring up a subject that everyone with PN has thought about more than once. I'm a few years younger than you with now 9 years since diagnosed but it likely started well before 2015. Unfortunately, this disease has more questions to it than answers. That is the problem. With idiopathic, the medical community can tell us what we have but not why. As far as the future? Everyone with PN is different so no hard to predict but my wife and I plan ahead and figure out how to do it one way or another. We may need to make changes on how we do things now as compared to how we did the same things before which for me is OK. Be well, keep moving. Ed

thank you

thank you. I lost my wife in Nov 2020. It's been hard and depression is a problem I'm glad I found this group.

Sorry to about your wife. Stick with this group as much as you can. I joined several years ago and found this forum to be one of the best if not the best source of information pertaining to PN. Our great mentors will provide links relating to web sites that are informative to help us along the way. The docs can do only so much, those of us coping with PN know first hand what this is REALLY about. Simply put, we learn from each other.

Look, you need to get other opinions. Just because two docs are not giving you any answers doesn't mean there are none. I had to take control of my own medical care years ago when two orthopedic surgeons told me point blank after a cursory scan of my records that there was nothing to be done, just live with it. I finally found a neurologist in private practice who spent over an hour and a half checking me over (yes, an hour and a half). She put me on a cocktail of meds that, at first, made me dizzy and unsteady. After a few days things settled down. In a few weeks I was able to get out and start cycling again. Had I listened to those first two guys, I would likely be in a nursing home by now. Good luck!

Dear @petr,
I’m Greg D. 68 yo now - still alive - and married with my wife, Karen.

I had a TBI in 2012 from an accident. 2 years ago, I feel down on both rear-ends in my garage. That changed my physical to bad-balance, little feeling on my right knee down, and >pain< and, oh, >pain< .

Recently (it takes my writing is hard and the word landuage - sp?), I had a (lose word, uggg) a doctor that fixed on the top of my rear-end to the bottom of my back. It took him 7-9 hrs and fixed my 9lose the word, uggg) close to my bone side. The pain, that killed me, is gone - thankfully. It took me staying the 5 days from a hospital and was heavy to move my lower body. Ok, the pain is long down, but moving your body back to “normal”.

Yes, I exercise (that I’ve down this for decades ago and I still love it) an work on from the bottom of my rear-ends to the very bottom. Do I still have physical problems? Yes, but I spent a lot of moving, fix up, holding, walking, helping myself and going for pro medical people from my house and going to in thier blogs.

What cocktail of meds did she put you on? We are all looking for what will help all of us. Thanks!!