Newly diagnosed with Neuropathy - Advice?

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.

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.

@duh1eye
Did you get tested for Lyme disease? You may want to talk to your neurologist about CIDP and potentially get a spinal tap to confirm. CIDP is an autoimmune attack on nervous system. It may not hurt to also see a rheumatologist for autoimmune testing.

I would advise you not to rush into any kind of surgery unless it is an emergency. I had a spinal fusion in 2017 for supposed spondylithesis (two adjacent vertebrae out of alignment). Previous MRIs showed nothing remarkabke. but a new orthopaedic surgegeon orderd another one.
that's when he said I had the condition. I was fairly new to the pain game, so I went ahead with the surgery. Did it help with my pain? No. Did it correct the condition? Possibly. Who knows? If I could go back in time,I would get a second, even third opinion and would think long and hard about having back surgery.

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!

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?

@duh1eye Hi Janet - Glad to see you are off to a good start. I've been a member of this forum for several years and I have rarely seen so many responses in a day or so which means you have hit on a subject of interest to many of us. Advice. And those of us with PN know best what we are going through. I was diagnosed with idiopathic sensorimotor axonal PN about 8 years ago and confirmed by Mayo in MN. I like the idea you are working with a trainer and for me, the more active I can be, the better I feel. There are good and bad days which no doubt, we all feel. My largest problem is numbness and increasingly poor balance. Doctors can tell you what you have but I have found that those living with PN are best to give clues on what works for them. Since you have been following this forum for a few months, you know what might work for one will not work for all. I'd like to make two suggestions. First, remain positive and second, remain active. I wish you the best!
Ed