Hi Judy! I started my “idiopathic” journey a little north of you in Little River SC. My medical system in that area referred all special cases to MUSC, and making that long trip while needing a wheelchair was quite the hardship and required an overnight stay because of the distance demands on us. We also took a referral to Duke since we believed it might know a little more and was as equally hard to travel to as MUSC. Long story short: both provided what I’m learning are standard tests and their plans of treatment were the same… to see them every 6 months and watch and see if it gets worse, and if it did, they’ll think of next steps.

My local Neurologist then had prescribed Gabapentin and that’s all I take today. It helps keep the pain in check from my PN and takes the edge off the severe coldness or warmth I would often get in my feet & hands. It’s not a cure and it doesn’t do much for numbness or tingling. I’ve learned to make sure I keep on schedule because missing a dose increases the possibility of those symptoms to return and can take a few cycles to get the medication working at an even keel again.

I decided back then that continuing to go to the medical university hospitals was too much of a travel and financial hardship on my family for a “wait & see” approach and no treatment plan. I decided to use my local Neurologist to do that monitoring and would save the travel back to the distant institutions if I was to get worse. I felt I got better bedside manner with my local Neurologist too, and more of the direct “I don’t know” and partnership that @ray666 describes.

What helped me first was my will to NOT get worse because I wasn’t convinced there’d be a medical solution by the specialists if I did, and then we’d continuing watching to see if I would keep declining. I wanted a plan to maintain or improve during the wait, not get worse! I wanted to get out of the wheelchair. Then I realized how great of a partnership I had (and needed) with my PCP who kept me on track by listening and managing my total healthcare needs. Along with my Neurologist, they made sure I had open access to the Physical and Occupational therapy. I needed to strengthen and adapt to my new limitations. I’m happy to say I was out of the wheelchair in 6 months. I can only walk/waddle short distances and keep my walker and cane on hand for obstacles (steps, curbs, need to carry things in/on). I can walk stores and around sports venues and a few city blocks. I’m handicapped but I can drive!

It’s been 8 years since Little River. Over that time I’ve had to relocate a few times, which meant getting new partnerships with good, supportive PCPs and a Neurologist. I’ve accepted I don’t have a clear diagnosis, cause, or a cure. I’ve accepted that I’ll never run, bike, or play pickleball again. But I’m grateful for what I can do, and call for PT appointments as needed to keep me in hopes of not regressing with this thing. I’m proud to say I d never gotten worse to feel the need to seek out a medical university vs the local Neurologists I’ve had.

I’ve now had to move back to SC, and am closer to Charleston. I found a great PCP and a local Neurologist and know MUSC is still there if I get worse. The greatest tool of all I’ve had is this Mayo Connect forum. Real people with real experience with real suggestions on things to try that might work for us to make the best of our new challenges and getting the most out of our lives!