Living with Neuropathy - Welcome to the group

Yes, unfortunately there is no cure, no magic pill. I figured after being told I had peripheral neuropathy for about 5 years, I'd find out once and for all. My wife and I in Feb 2020 went to Mayo in MN to get real answers. After a large variety of tests, I was told what form of PN I have and there is no cure. If there was a magic pill, they would know about it. They confirmed what other docs said and it was very hard to accept but I did and from that point, I focused on what to do to live with it. So, I'm now 9 years in and make life adjustments along the way. Ed

Ed. That’s exactly what I have done. I do have some pain relievers but only take 2 early in the morning and 2 at bedtime.
That allows to at function during the day. I have to use a cane to walk. I use a walker in the house. However I can drive safely.
-Rich
PS: I’m 77. No more surgeries. I already have 16 screws in my spine

Hello all, I am 57y/o and still have at least 6 to 7 years to go before I can retire. Did anybody start feeling symptoms at or near my age and were and are you still working?

Hi Nate @natelew, I'm 81 now and retired from my second career which was mostly a desk job in 2020. I've had neuropathy since my late 40s that gradually progressed but I never had any pain, just the numbness and tingling. I'm not a doctor or medical expert but neuropathy probably won't kill you but can make you pretty uncomfortable depending on your diagnosis and the symptoms you have. Prior to that I had several different jobs with my 32 year career with IBM before retiring in 1997. The numbness in my feet bothered me a little during my latter years with IBM but didn't interfere with my job. I would focus on learning as much as you can about your condition and what lifestyle changes you can make to help keep doing what you love doing. I would say the same thing if you were already retired 🙃 Every day is a gift and having cup of coffee, tea or your favorite beverage with your friends and family is priceless.

If you haven't already seen it, the Foundation for Peripheral Neuropathy has a lot of helpful information - https://www.foundationforpn.org/living-well/

Thanks John! I am really glad I join this community. Great advice and information from everyday people.

Thank you so much. I have forwarded this to my daughter. Hopefully something will help. She also has an appointment at the Mayo Clinic in February.

Nate - I too was in my late 50's in 2009 and started to feel that little numbness in the bottom of my toes left foot only. According to my docs in 2016, that was likely the very early start as it took years for it to be where it is today. However, I was determined to remain active, and I worked into my 70's. Progression will vary with each person, and hopefully remaining active will allow you to work at least the 6 to 7 years and more if desired.

Thank you - support from people suffering with neuropathy will be helpful. I have had idiopathic neuropathy for 20+ years. I recently (Aug 1 , 2024) opted for Triple Nerve Surgery. To date - no improvement, actually worse. I can walk again for that I am grateful!! Again looking forward to getting acquainted.

General question; I live on the east coast, besides the Mayo Clinic what’s another good facility that specializes in Neuropathy care in the Northeast part of the states?