After diagnosis, do you continue to see your neurologist?

To bjk3 and Ray666
You have fond memories of the doc with black bag who made house calls. I do, too. My doctor came to my bedside when I had a bad case of the measles in 1962 .Also, I recall the TV scene with Dr. Ben Casey, Dr. Kildare and lets not forget Marcus Welby MD. Plus, there were a number of medical/hospital drama shows on the tube. Now all we get are nearly non-stop commercials (and lies) from Big Pharma. I found out that physical therapy is rationed out. Making and cancelling doctor appointments is an ordeal here in NY. My neurologist was not big on physical therapy. He said I could do that stuff at home.

Hi, @arcuri24 ~
I am sorry that your experiences have not been what you were hoping for. It sounds like a second opinion from a different neurologist might be a good idea. This particular specialty seems to be in short supply, compared to the demand - hence the long wait times for appointments. We have that here too in the Midwest. However, if you can get a recommendation from someone you trust, I'd encourage you to make an appointment with that doctor or physician's associate. In the end, you may find a more helpful outcome.
Peace, ~ Barb

Thanks for your words of support. I cannot totally fault my neurologist--he did lead me to a diagnosis--celiac disease--it is autoimmune and may explain why I developed neuropathy. I also had some muscle loss and now I am trying to regain what I lost and at my age, it is not easy at all. I do have an appointment with another neurologist in October. It seems like many of these doctors are stuck somewhere in any ivory tower and cannot grasp what we are feeling--physically and emotionally. In the meantime, I am gluten free and happy to report that there are many gluten-free food options in the supermarkets and bakeries. I continue to do my own research and this website really helps! I wish you peace as well.

I have seen 5 different neurologists and their PA's. Most (maybe all) seem like good people. I can just imagine specializing in a field where the most common problem is one that you can do very little for. This is a perfect setup for "burnout" of the person. Burnout typically expresses itself in a distancing oneself from people that may have contributed to the problem. When you get right down to it, not having burnout shows that the physician is a resilient individual. Unfortunately, the neurologists I saw did drive incredible vehicles. In either case, big pharma profits from our condition. And I might be paranoid, but big pharma just might be encouraging congress not to fund research in our area of need. It is a way of ensuring that the current generation of drugs remains the status quo. YES I'm pissed with my condition and the way things are!!!!!

You know it’s very interesting. I was diagnosed with autonomic neuropathy 2 1/2 years ago and now 2 1/2 years later my diagnosis been reconsidered and I am going to be tested for Parkinson’s disease ain’t it a bich

I have sufered with perif. neuropatthy for over 15 yers. No pain, only-leg numbness. No neurolgist or any othera doctors give any hope of some treatment that may or may not help. Eveyone needs to work on this using any and all ideas.

Hello @eas1941, Welcome to Connect. I too have had peripheral neuropathy with no pain and only numbness and some tingling in my legs and feet for many years. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think one of the best things we can do to help ourselves is to learn as much as we can about our condition and what treatments are available that may provide some relief. My favorite go to site for learning more about neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/.

There is another discussion you might find helpful:
-- Neuropathy: Numbness only, no pain
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
Have you found anything that provides some relief from the numbness?

I would not rule out the Mayo Clinic.

Thanks

I so agree. Seems like they don't feel like we are worth the extra time and rxpense to study neuropathy