Hello Colleen (@colleenyoung), John (@johnbishop), and all!

My husband John has Peripheral Neuropathy. Initially (approx. 20 years ago), it was diagnosed as "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now the diagnosis is unclear. It is much like John's (@johnbishop). It is still believed to be hereditary, and perhaps a "new" subgroup of CMT. It predominantly affects both lower legs and feet, with a lesser affect on both lower arms and hands. It does not (THANKFULLY) involve pain.

For those who are near Johns Hopkins, I would recommend Dr. Sumner, a Neurologist in the CMT Department. John has been very happy with her.

John has also volunteered to participate in a number of on-going Neuropathy studies (at Johns Hopkins) NOT involving medications (at present, anyway). We hope that his participation will help the research into Neuropathy.

In fact, I would encourage others to be part of studies/research possibly going on in your area. It may not help you in a direct, medical way, but it will certainly help you to feel better for helping in the research projects. And the person you may be helping, could be your child or grandchild!

Aside from the Peripheral Neuropathy, John has now developed Polymyalgia Rheumatica (PMR). Is it something potentially related to his Neuropathy? Not according to the Rheumatologist; however, we don't really know all of the potential ties to other diseases. So we have put Dr. Sumner (Neurologist at Johns Hopkins) and our Rheumatologist in touch. Could it lead to new/different findings? We don't know, but if this can help researchers look for different patterns, or in different areas, why not help them?

Our best to all!

John and D.

Hello @danielad

It is so good to hear of your involvement in clinical trials. Thank you for showing consideration for future generations. That is really paying it forward!

Teresa

Thanks for your reply Teresa @hopeful33250. Our take has been very simple -- We all have choices; we can give in to anger, despair, and other such negative emotions ... Or try to make the best of the cards we have been dealt, and try to funnel negative energy into something positive ...

@danielad You are doing that well! Teresa

I am new to this discussion. I have hereditary neuropathy numbness in my feet. Am searching for something to help/relieve the numbness as it affects my walking/balance/feeling (of course!). Just recently started gabapentin but have read it does not help numbness. HELP! I am getting desperate.....thank you

I found out my 'type' of neuropathy today ... my neurologist says "axonal sensory neuropathy", and it's severe. Do any of you have that? She recommends Lyrica at night and gabapentin during the day. She also says I have RLS. It was the tazer test that told them that my condition is severe - I jumped about a foot off the table when they zapped me behind the knees. I knew they did 4 more but I don't know where as I didn't feel them.
Do any of you have "axonal sensory neuropathy"?
Peggy

I'm a new member of your group. I've thought a lot about trying to find others with a similar condition as mine so I don't make uninformed decisions. I am 67 now but at 18 years old I came down with Guillan Beret syndrome (sp?) so I believe my nerve system is compromised. I started getting prickly, burning, achy feelings in the feet 4 years ago that are somewhat tolerable during the day but hard to tolerate at night especially on the left foot where I had ankle surgery just prior to the diagnosis of chronic, ideopathic, peripheral neuropathy. The condition got so bad that I wasn't myself, had anxiety, depression which I've never experienced before so was told to start on gabapentin which helped a lot. Smaller doses became larger doses to keep the nerve pain at bay and get sleep. I tried to withdraw last year (by reducing by 300mgs/day per week) and came down to 600mgs/day from 3600 however the pain and loss of sleep had me bringing it back up again. I've been on gabapentin for about 4 years and am now at 2700mg/day.
My goal now is to try to withdraw from taking gabapentin entirely.
Question: Would it be better to withdraw more slowly - like by 100mgs/day and hold that for two weeks and tolerate the nerve pain and loss of sleep to get off the drug, or should I slow it down even more?
I fear the anxiety, depression, pain will be worse than the side affects of the drug, so thence the question.

I tried to 'unsubscribe'. I can't keep up with all the emails.

Hi everyone I have nuero pathy and major brain fog. I have a chronic illness it’s lovly gives yo7 tons of symptoms. I had it so bad I was tingling in my face my legs my hands felt the paralyzed the EMT after getting my medical recordsd marked me as a psych patient really nice. I am receiving no help. What helps you with this?

I have had neuropathy for about 5 or 6 years now. I won't bore any body about how many things I have tried because I would bet that most people in this group have been through every thing that I have. I am to the point where I am going to try the stimulator.. I would like to know if any body has tried this and did it work for you.?