Newly diagnosed with Neuropathy - Advice?

Welcome @duh1eye, You will notice that we changed the title of your discussion a little to hopefully bring in other newer members looking for help with neuropathy. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. My suggestion would be to keep doing what you are doing now, asking questions and learning as much as you can about the condition and what treatments are available.

There are quite a few members who have started discussions and commented on the topic "neuropathy what helps". Here's a search link with the results - https://connect.mayoclinic.org/search/?search=neuropathy+what+helps.

The Foundation for Peripheral Neuropathy site is a wealth of information also. Here are a couple of their references that I've found helpful:
-- Living Well with PN: https://www.foundationforpn.org/living-well/
-- Videos on their YouTube channel: https://www.youtube.com/@foundationforperipheralneu4122/videos

If you don't mind, can you share about any treatments that you have tried or found helpful?

Thank you, John, for your speedy and helpful response. I have just begun to peruse the extensive Foundation for Peripheral Neuropathy website, and your suggestions will give me a good place to begin my exploration. Fortunately, I have not experienced pain, so I have not yet needed pain relief. I began 600 mg/day of ALA, a couple of weeks ago, and I just ordered r-ALA, which I’ve read is more effective. I will likely switch to that when it arrives. Other than staying physically active, doubling down on a healthy diet, and making sure I get good sleep, that’s about all I’ve done, to this point. I have had a series of Bemer treatments, which have helped my knee arthritis, but I’m unsure about its potential help for FM. I’m open to suggestions re that.

Sorry! PN, not FM (which I don’t have.

Welcome, @duh1eye!

What struck me first off was your diagnosis: "mild sensorimotor length-dependent large fiber peripheral neuropathy." Yours is pretty much a match for mine. I'd been aware that my balance wasn't "right" way back in the early 2000s, although I hadn't received a PN diagnosis until August of 2022.

You've asked a superb question: If I could return to the early months of knowing I had PN, what do I wish I might have known back then? The answer? Many things. But I can place those many things in two categories: LEARN (all I can about my condition) and KEEP MOVING (never let my condition get me to "call it quits" with things I like to do).

It's been two years since my diagnosis, and yet I'm still learning (@johnbishop has suggested the Foundation for Peripheral Neuropathy site; FPN's recorded webinars are a semester's worth of learning in themselves), and I'm still moving (I smile to see I have Twyla Tharp's "Keep It Moving" on the table beside me)

I realize my answer to your question is simplistic; however, LEARN and KEEP MOVING are the two pillars supporting my wholeheartedness as I continue living with PN.

Cheers!
Ray (@ray666)

Ray, your answer may be simple, but profoundly important. Fortunately, I’m plugged into Pilates and a personal trainer, each once a week, and I faithfully track my daily steps, but I plan to “step it up,” as it were. And research and learning is, and always has been, an important part of my life, so finding out about any suggestions for resources, is more than welcomed. Since we have a similar diagnosis, I’m curious as to whether your symptoms have advanced much since your diagnosis. Thank you for your response, and also your support. I truly appreciate it.

This will be the briefest of replies as I've got a deadline today at 5 –– but I did want to tell you that a follow-up EMG, performed 14 months after the EMG in 2022 told me I had PN, showed little or no progression. I found that powerfully heartening –– and motivating! ––Ray (@ray666)

Hi Janet! If you add the word Idiopathic and change the word “mild” to “severe”, I have what you have. It sounds like you are out of the gate running and full of determination already, and just by finding this forum are so far ahead in confronting this PN head on.

I feel like I was doing a lot of the right things, but since it took me a couple of years to stumble on this Mayo Connect forum, I was on my own, guessing my way through living with this thing, without validation that I was doing good or bad for myself. EXCEPT for Physical Therapy - that was and continues to be my foundation for getting through the life challenge of PN. I have a daily exercise routine at home, and schedule professional sessions when I need some tuning up.

What I wish I’d done differently perhaps was to have gotten the chip off my shoulder sooner. While I think some frustration in lack of medical direction and support in dealing with PN is normal, in hindsight, I wish I hadn’t spent the negative energy, as all our energy could be much better used to positively figure out what we can be doing to help ourselves. Sure, we all want to understand what “happened” to us and want to help doctors find a “cure” for us, but the only thing we can control today is finding what works for us to maintain or improve living with this, and try our best not to regress.

It seems to you’ve hit the ground running, I love your determination and motivation, and hope we learn a lot from you!

@duh1eye

What symptoms did you have that caused you to go for diagnosis? What tests were done, what specialist doctors did you see, and what were you told was the cause? Are you prescribed any medications or told what could help delay the progress of your condition?

Debbie, thank you for your encouragement and supportive comments. I do feel so fortunate to have discovered this forum so early in the game, as other than my husband, a close friend, and our daughter, I really haven’t shared my symptoms or my new (as of this week) diagnosis, so it’s good to be able to “talk” about it in a save, supportive environment. Right now, it doesn’t “show,” and hasn’t slowed me down, so I don’t want it to define me, if that makes sense. I’m grateful to have a nursing background, which makes it much easier to navigate the wealth of information out there. I have already learned so much from all of you. Take care!

My symptoms started in late March with the classic sensation of feeling like I was “wearing socks” or had dipped my feet is wax, which prompted a visit to my primary care provider, and ultimately to a neurologist. The numbness (no pain) in my feet quickly advanced to above my knees, with variable intensity. Since then, I’ve experienced what I’ve called a “chilled” sensation in my arms, legs and back (not present all the time), which, just over the last couple days, almost feels like a light sunburn. At this point, I’ve had no balance or mobility issues, although, I have, independently of PN, been doing balance excercises twice a day (while I’m brushing my teeth;-), for years.
I have had: blood tests; lumbar spine xray; sensory evoked potentials; MRIs of lumbar, thoracic and cervical spine; and EMG/conduction study, which revealed my diagnosis.
As to cause, I did have a severe bug bite a couple of months before my symptoms began, which could be the cause, but at this point, that’s no way of knowing. In all likelihood, I, as so many others, am dealing with ideopathic PN. I haven’t been prescribed any medications at this point, but my follow up with the neurologist isn’t for a few weeks. But because of what I’ve learned on this blog, I began 600 mg alpha lipoic acid a couple of weeks ago, after consulting with my primary.