Living with Neuropathy - Welcome to the group

Hello @catwoman50, Welcome to Connect. I'm not diabetic but have been in the pre-diabetes category for most of my adult life and have suspected it may be partially the reason why I have neuropathy although I have been diagnosed (sort of) with idiopathic small fiber peripheral neuropathy. I don't have any pain but do have the numbness and some tingling which does cause me to have balance problems. The Foundation for Peripheral Neuropathy has a YouTube channel with a few webinars on diabetic neuropathy and foot and balance problems. They are great for learning more about the condition. Here's a link to the videos - https://www.youtube.com/@foundationforperipheralneu4122/search,

There are also quite a few discussions on diabetic neuropathy what helps where you can learn what others have shared - https://connect.mayoclinic.org/search/discussions/

Have you tried any exercise or therapy to help with the balance related issues?

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

@johnbishop was wondering How you get the Medical Diagnosis from ? if that is not a silly Question and how to go about finding the right persons ?

Have dealt with increasing neuropathy for almost 10 years. It began after a long hot walk on concrete and then standing on concrete for another 30 minutes. The discomfort in legs and feet were slight at first and sometimes unnoticeable. However year after year my lower. legs ( not my feet) became more and more uncomfortable with aching, tightness (no swelling) and numbness. I began wearing compression socks and trying to avoid standing in one position for long periods of time. This has helped. I began acupuncture with electrical stimulation on my legs and feet and continued for about a year. This helped. We moved and I started laser treatments which were helpful but very expensive. Since stopping laser my feet have become involved, the discomfort or pain travels past my knees into the thigh and I am having difficulty with balance. I continue to exercise a hour or more daily but am not sure how long I will be able to continue.

Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At 83 I try to do the same thing. It does help. Not sure if you are familiar with the Foundation for Peripheral Neuropathy but they have some helpful suggestions on healthy lifestyles here - https://www.foundationforpn.org/lifestyles/.

I also wear compression socks but they don't really help my neuropathy but they do help control the swelling in my legs from lymphedema which is another nasty condition I am blessed with. Lots of great discussions in the Neuropathy Support group if you haven't checked them out already - https://connect.mayoclinic.org/group/neuropathy/.

Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At 83 I try to do the same thing. It does help. Not sure if you are familiar with the Foundation for Peripheral Neuropathy but they have some helpful suggestions on healthy lifestyles here - https://www.foundationforpn.org/lifestyles/.

I also wear compression socks but they don't really help my neuropathy but they do help control the swelling in my legs from lymphedema which is another nasty condition I am blessed with. Lots of great discussions in the Neuropathy Support group if you haven't checked them out already - https://connect.mayoclinic.org/group/neuropathy/.