Diagnosed with Peripheral Neuropathy, or not??

@pkh3381, You mentioned in an earlier post that you had Functional Neurological Disorder (FND). I'm wondering if some of the PN type symptoms you are having may be related. I'm not sure if you have seen the FNDHope.org website but it has a lot of information that you might find helpful - https://fndhope.org/.

I know it must be extremely difficult trying to navigate your symptoms and treatments over the years. Have you ever discussed FND as a possible cause of your neuropathy symptoms with your doctor/neurologist?

Thanks again, John!
P.

Thank you for your response. I am new to the site and just found that I have many notifications. I will check out your link. I have always wondered if my feet/lower legs could be related to the FND, so I am anxious to read the info on your link. Thank you so much for the info!
P.

My husband was diagnosed by our local neurolgist and I am thinking of getting a second opinion at the Mayo Clinic

The reasons why I am thinking that it may be the wrong diagnoses is that he has no pain in his legs, feet or hands. He is not a diabetic, he is not an alcoholic and was able to walk just fine a few months ago.

A few months ago he fell and went to get his head checked out because he is on blood thinners at the ER. Everything looked good. Then a month later he cannot walk. A few months ago he played golf as much as twice a week

I expect in time you'll receive lots of replies. Peripheral neuropathy can be such a crazymaking condition to properly diagnose. For one thing, there are so many varieties, with each variety bringing its own symptom or symptoms. I was diagnosed in August 2022 and informed I have "idiopathic (cause = unknown) sensory-motor (feeling, balance, and gait) peripheral neuropathy." Like your husband and many here, I'm unsteady on my feet and have a wobbly way of walking, but again like your husband, I have no pain (for which I consider myself most fortunate). I applaud your idea of getting a second opinion from Mayo. I, too, have checked and double-checked my own diagnoses. Have you and your husband already requested that second opinion? One way or the other, it should prove to be a great relief to both of you to see if two diagnoses dovetail and for your husband to have a surer idea of what is causing his difficulties. My best wishes to you both! –Ray (@ray666)

lrobinson - I would suggest your husband does apply at Mayo. I am not a diabetic; I do not drink alcohol and I have no pain in feet, legs or hands. Yet, I have sensory motor peripheral neuropathy (idiopathic) with severe numbness and like Ray, poor balance. I was successful in securing an appointment in early 2020. Be prepared to submit any and all information on tests that has been performed. In my opinion, you won't find a better place. I wish you and your husband success in getting to the bottom of his problem. Ed

I have discussed the second opinion with him and I think that he is onboard. I am collecting all of tests and he will check to see if his insurance pays for a second opinion.
Thank you

Have them do an MRI and check for normal pressure hydrocephalus. My mother law and her sister both had this. It is often missed by neurologist. It came on very sudden for them. Could not walk. One of them could not even stand up without falling down. A shunt was put in for each of them and one can walk very well. The other is much improved but still insists on using her walker. Hope you find answers.

I hope you get into Mayo for the second opinion. I tried the one in Jacksonville 6 months ago and did not get in even though I went there for a different condition 12 years ago and they still had my records. They put me on a waiting list but since I haven’t heard from them yet I have dropped off the list since it has a time limit. Best of luck and I hope your husband gets better soon

I have been fighting Peripheral Neuropathy for over 5 years now and was rendered 60% disabled by the VA three years ago. I was way up next to the DMZ in Vietnam on the smallest Landing zone supposedly -LZ Sally. After so many years of mounting problems and lots of testing the VA finally came up with this PN Diagnosis.

I have tried everything nearly, that I find along the way, and just tried Ketamine Infusions (2) but the doctors and I agreed it did NOT help and only seems to have made it worse. I have severe pain and numbness in feet and hands and it is creping up my legs and arms, no power in my arms, and my balance is continuing to get worse!!

I did go to a place called Compass Medical here in Grand Junction, Colorado after my Laminectomy Surgery and they did tens unit on feet with infra red boots, chiropractic, one massage (per week), and shots in my feet with lots of Vitamin B. I have noticed getting worse since I stopped going, and after taking the Ketamine infusions so at a total loss on what to do.

I know I need to drink a lot more water during the day and I have been exercising 30 to 40 minutes with stretches, exercises, and yoga 6 days a week and working out with light weights twice a week. It helps some but I still have horrendous pain in the feet, hands, and now more in the legs and arms. Anyway I am nearly 80 now so know that old age is probably the biggest influence. I have the most wonderful wife a man could ever have so I keep going for her and have told her I will no longer stay alive if I have to go to a wheel chair or any special care as it would not be fair to her.

I wish you ALL the very best in the coming year and beyond and will keep people updated should I miraculously come across anything that might help with PN. I do acupuncture which helps and am currently seeing a good chiropractor/acupuncturist at the VA Medical Center. Thank you and Semper Fi.