Looking to connect with people who have non-diabetic neuropathy

Yeah that was my question. It was for Bruce2666. I was just wondering if any medications have helped him cope.

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

Is MGH stand for mass general hospital.?sounds
like a good dr if she is willing to stick with you and try to help . All my guys just keep sending me on to Neurosurgeon who think both hand and feet probably coming from stenosis, but will not believe any of them so of course they pass me.on.My neurologist sent me to them. Going to Hopkins in sept but that is huge institution so not looking forward to that . Talk about who could care less . I was just hoping they had better medical devices an test to help me figure if this is small fiber nueropathy.

Hello , to @arcticmark, the only tests I know of is skin punch biopsy. Fr some reason no neurologist wants to do it. I’m calling my insurance co. To final ANYONE who I can see( maybe 3 hours north).
Best of luck n prayers to you. My PN is horrible n plays of my spine stenosis 🙁.
I hope u have someone who gives you joy because it helps so much.

I want to thank all of you for your input/advise, I am going to make an appointment, I hope they will confirm because I went to Neuropathy clinic before and even had an EMG done.

I’ve got spinal OA, stenosis, s/p L-S spine fusion 1990 with chronic PN bilaterally. At 69 no longer a candidate or want repeat fusion surgery. I just discovered a better mix of CBD/THC and I’ve decreased my PRN oxycodone to 2x day a d headed for one. I’ll still need buprenorphine patch but less narcogesic meds is a win in my eyes.

Here in Pennsylvania where it is still not legal except for mmj but we cannot grow our own either. Great you have plants now you just need to process them. There is material you can buy to process the whole plant, aka full spectrum but know how to grow a plant that is lower in THC and higher in CBD. I purchased 1000mg RSO and have made that into capsules and I take it 3x day, In the morning I take Ilera Healthcare Ease Tincture CBD:THC (10:1). At bedtime I take Ilera Healthcare Hope 2 Tincture CBD:THC (1:5) and anyone's make of THC Tincture >1.75%. Throughout the day I Vape CBD dominant oil to supplement my CBD levels. I no longer get buzzed from THC and I sleep like a baby.

Here in Pennsylvania where it is still not legal except for mmj but we cannot grow our own either. Great you have plants now you just need to process them. There is material you can buy to process the whole plant, aka full spectrum but know how to grow a plant that is lower in THC and higher in CBD. I purchased 1000mg RSO and have made that into capsules and I take it 3x day, In the morning I take Ilera Healthcare Ease Tincture CBD:THC (10:1). At bedtime I take Ilera Healthcare Hope 2 Tincture CBD:THC (1:5) and anyone's make of THC Tincture >1.75%. Throughout the day I Vape CBD dominant oil to supplement my CBD levels. I no longer get buzzed from THC and I sleep like a baby.