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