Polyneuropathy

Hi @lewin, I can understand your frustration. Neuropathy Commons is often where I go to learn more about neuropathy and it's symptoms. Not sure if you've seen this but I thought it might be helpful for learning more.

-- Neuropathy & Your Bladder:
https://neuropathycommons.org/neuropathy/neuropathy-your-bladder

Have you thought about seeking help from a urologist at a teaching hospital or major health facility?

We have essentially one hospital system that has taken over everything and I am sorry to say I have little faith in them. They have a terrible neurology department. Had to arrange to have biopsy done by local dermatologist and sent to Oaklander's lab, We should not have a for profit health care system,

I understand your dilemma so well. I was diagnosed with neuropathy in the early 1990’s. The doctor prescribed Gabapentin and increased the dose often until I had serious side effects.
Since that time I depended on ice packs at night and alpha lipoid. Just recently I had nerve conduction testing first for my legs and recently for my arms. When I met with the doctor this week he asked me what the leg test showed. Apparently he had not read the report. Then he told me there wasn’t anything he could do but as an afterthought suggested B vitamin complex and Tonic Water which has quinine as an ingredient.
I just had the arm study done and it also showed progressive poly neuropathy. I don’t know that I will try the Tonic water.
My physical therapist ordered a second AFO brace for my legs…I can barely walk on my own and I depend on a walker or a scooter in larger stores.
Even though I live in a small town near the state capitol I have been told that Neurologists would not see me because of my age. I am 78. I feel as though I have been shortchanged since moving here. I dutifully take Gabapentin 900 to 1200 mg a night and then use an ice pack with it. I am now trying TENS on my legs at bedtime (a suggestion I found online.)
My Physical Therapist has been my saving grace. He answers my questions truthfully and is the reason I can move around.

Hello Lewin
I am so sorry to hear the difficulty you have had with your medical care! You had mentioned that you were frustrated with lack of research on neuropathy, have you tried goggle scholar to search current medical research regarding
Peripheral neuropathy? Also there are organizations that have great information for both patients and healthcare providers. I frequently use GIB-CIDP.org
I hope things get better for you.
Kim

I have sweating and now bad dizziness. I need to see a very good specialist. I want this sorted out if it's being caused by long-term pre-diabetes or something else. Doctors in Pittsburgh no good. I wanted to see Peter Novak at Brighan Womens but a long wait. I can go to Cleveland Clinc but don't know a very good doctor there. Who are the best doctors to see. I am tired of not knowing what is going on.

@lewin I'm sorry to hear that you still haven't found any answers from your doctors and are having trouble getting another appointment. You also started an earlier discussion on Polyneuropathy here - https://connect.mayoclinic.org/discussion/polyneuropathy-2/. I'm not sure if you have been diagnosed with Polyneuropathy or Autonomic Neuropathy or if you have seen a neurologist. If it were me, I think I would try to seek help at a teaching hospital or major health facility like Mayo Clinic or Cleveland Clinic. Here's a search function for finding a neurologist at Cleveland Clinic that shows their rating and some patient comments:
https://my.clevelandclinic.org/departments/neurological/staff?q=autonomic%20neuropathy&dFR%5BsearchCollections%5D%5B0%5D=113

Thanks John--Not sure if my insurance would cover at Mayo. I will check out Cleveland Clinic.

@lewin I have been diabetic for nearly 50 years. I have had peripheral neuropathy (effects extremities) and autonomic neuropathy (affects internal organs). John has provided some good informative links. I hate dealing with insurance (a necessary evil). Will you update here as you hopefully make progress?

Hello @lewin. I noticed you had started a similar discussion some months back, so you will notice I have moved your most recent post here to provide an update to members who had joined you:
- Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy-2/

Have you started with your primary care physician and requested a referral to a neurologist who would best see you? Or, are you looking for a second opinion?

@lewin I had tried to make an appointment at Mayo in Jacksonville 3 years ago, they told me since I was on Medicare, I had to go to Rochester, MN. Try not to go in February as I did...brrrr.