Polyneuropathy

Posted by lewin @lewin, Jan 20 7:55am

I am fed up with lack of research and current doctor who doesn't try and get my help. I have getting sicker and sicker. I have so many horrible symptoms. This is a neurological disease. I am losing control of my bladder. Was up three times last night. I live in Pittsburgh and there are no doctors here who can help me or understand the illness. I am tired of hearing from people who use supplements to help with what is a degenerative neurological disease.

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Jan 20 8:39am

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?

lewin | @lewin | Jan 21 8:10am

In reply to @johnbishop "Hi @lewin, I can understand your frustration. Neuropathy Commons is often where I go to learn..." + (show)

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,

tizzieliz | @tizzieliz | Jan 21 11:32am

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.

kimegraves | @kimegraves | Jan 22 12:38pm

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