Looking to connect with people who have non-diabetic neuropathy

Hello,

I also have inherited/idiopathic peripheral neuropathy. I have had symptoms that have progressed for decades which I had no idea were PN for decades, like being able to walk on snow, hold hot things and to sweat excessively. More recently my feet have become painfully numb, with tingling and hot burning glass being common states. The a little over a year ago my hands became painfully numb, the teeth on my lower right jaw began to go numb and I began loosing hearing in the low tone in my right ear. In 8 months I lost 60% of the hearing of low tones. Unfortunately, old age deafness is the high tones and that is what hearing aids are made for. For low tone deafness, the only device is a microphone that I give to the person I am talking to. I have another hearing test in a couple months and I'm sure I will have lost more hearing.

Getting a good doctor is hard but there are some out there. Dr. Oaklander at MGH does 1/2 research 1/2 patients and hasn't been accepting new patients when I have inquired. However, she is looking at the use of IVIG for people with idiopathic PE and no positive results for the standard autoimmune or inflammatory tests. My neurologist at MGH, Reza Seyedsadjadi is great at working with me to figure out what is going on, being thorough in his testing and making sure that all available tests are used.

I also highly recommend the pain clinic at Newton Wellesley Hospital, they checked my meds, adjusted them and then tweaked them for the most current pain relief mechanism.

I have also seen neurologists at Mayo clinic and Brigham and Women's Hospital who were excellent and tested everything that MGH had missed. However, the wait times to get in can be crazy so I am not advocating that you see them, I waited 14 months to see an autonomic PE expert at the Brigham, that is not reasonable.

Good luck in your search I would love to stay in touch!

Mark

I have terrible nerve pain, in neck arm leg foot hand and eye n head. All mainly on left side except for my neck.
I had neck surgery years ago and I have 6screws, 2 plates and 2 rods. I can't tolerate this awful pain and numbness in hand and foot.
Gabapentin not working. What should I do, can't take ibuprofen have ulcerative colitis 😭
Cindi from Massachusetts

I just was diagnosed with foot neuropathy; my Mom’s feet are a mess and because I was told it’s genetic I want to do everything I can to prevent that from happening to me!

Welcome @bannie24, Sorry to hear you were just diagnosed with neuropathy in your feet. Best thing you can do is learn as much as you can about your condition and what treatments are available that might help. One really good source for neuropathy information is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/. You might also find it helpful to scan through the many different discussions here on Connect to learn what others have shared. Here's a list of discussions found when searching for "neuropathy what helps" - https://connect.mayoclinic.org/search/?search=neuropathy+what+helps.

Did your doctor or neurologist suggest any treatment or lifestyle changes to help? Do you have pain associated with the neuropathy?