Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

@rybren, I was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo back in 2016 after many years of watching the numbness go from my toes into my legs before deciding I wanted to get a diagnosis. I only have numbness and some tingling so what all of my doctors told me over the years turned out to be the same thing the neurologist told me after running some tests and a physical exam - there are no medications that help with the numbness. That's what brought me to Connect to learn more about the condition and possible treatments that might provide some relief. I shared my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

It sounds like the Gabapentin is providing some relief for your symptoms but you are wanting more answers. If I had it to do over again, I would probably go again but I'm local to Rochester so it's a short drive for me and doesn't require a hotel. If you already have a diagnosis and just are looking for a different treatment, I'm not sure the outcome would be much different...but then I'm not a doctor and have no medical background or experience.

How long have you had the neuropathy symptoms before you were diagnosed? Have the doctors suggested any other treatments?

@johnbishop thanks for your caring response. Diagnosed 4 years ago after all the testing and diagnostic work ups. Just not good at doing nothing so like you I joined this group which is very helpful. I just wonder if it is a
waste of time going to see the Dr’s for something they can’t help. Would prefer, like everyone to not at least give up. Not a fan of long term Gabapentin but it does help. Thanks

@rybren I'm glad you found Connect. There are a lot of proactive members here that are in the same boat and looking for relief for their neuropathy symptoms. Not sure if you have seen the Foundation for Peripheral Neuropathy website but it has been really helpful for me and others. They also have a YouTube channel where they have all of their previous webinars on various neuropathy topics that may be helpful for learning more. Here are the links if you want to check them out.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- FPN YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122

Hi, I have been on the large fiber idiopathic neuropathy journey for 10 years. I have no pain, just burning thighs and tingling. I am on 100mg Gabapentin 3x daily. (lowest dosage) It does help with the burning. I also take R Alpha Lipoic Acid, Benfotiamine 300mg, Acetyl L- Carnitine 750mg. I like to believe that these OTC drugs are helping. I also believe exercise is the main key. I do water aerobics 2-3x a week, indoor pool at local college. I try to go to gym 1-2 days a week. My chief complaint is BALANCE! I am back in PT and this time the therapist listened and is doing sensible workouts for me. Lots of strerching, squeezing glutes is extremely important I have learned to strengthen glutes helps with balance. My next visit is outsise and doing curbs. (I try to avoid and he is going to prove to me that I am strong enough to handle curbs, also he will have me walking in GRASS, another fear I must overcome. He is wonderful, he does everyday challenges, with balances I have grown fearful of. However I cant go to PT forever so when finished it will be up to ME to carry on, I am overcoming fears and dont want them to reappear. Its retraining the brain, must keep thinking I can do this, with safety in mind and do it. I am 83 yrs old and retraining the brain after letting it take over for the last 4 yrs, that is when balance issues started, but 10 yrs with IPN. I do not do neurologists anymore, they are useless in my opinion, we have to help ourselves and read MAYO CONNECT!

@johnbishop , I have been diagnosed via EMC with idiopathic peripheral neuropath about years ago. I have metabolic disorder and high tryglycerides, which match the picture for painful
PN. Gabapentin helps but leg pain at night can be terrific. Exercize three times a week also helps, but I have never seen a neurologist. Would or a visit to Mayo that be of any help?

Interesting that a few folks above mentioned exercise. I have found that exercise, or at least moderate to strenuous exercise actually makes my IPN condition worse. Specifically, leg pain at night and numbness in my feet - legs- during the day. I have not exercised in over a month due to exercising too hard and inflaming my symptoms. I hope to get back at soon but at a lower level.

Welcome @neurojudy, sorry to hear you also have idiopathic peripheral neuropathy. You mentioned metabolic disorder and high triglycerides. I also fit in the metabolic syndrome but never knew much about it and didn't even run across it until I started doing some research on my idiopathic small fiber peripheral neuropathy. I've been in the pre-diabetic category most of my adult life and didn't bother with a diagnosis because I only have numbness and all of my previous PCPs had told me that there are no neuropathy treatments (medications) that help numbness. They just provide pain relief. When I finally decided I needed to know, I had the EMG and nerve conduction tests along with a physical exam and the neurologist gave me the same answer as all of my primary care doctors - no treatments to help with the numbness.

That's when I joined Connect and started learning and sharing with other members with neuropathy. I do think exercise helps but not to the extent I would like it to help and too much is not good (for me anyway). What has really helped me is trying to get my body out of the metabolic syndrome by exercising, eating healthier, losing weight and trying to eliminate as much sugar as possible for a guy that really likes cookies 🙃

I do try to keep my legs moisturized daily which I think helps some as the peripheral nerves are near the skin and dry skin is not good for neuropathy in my non medical opinion. Here's just one reference on the topic - https://calgaryneuropathy.com/74-skin-care-for-peripheral-neuropathy/. Here's some information on the metabolic syndrome.
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

I'm a patient like yourself, so not really qualified to say whether or not a visit to Mayo would help unless you are not sure of your diagnosis.

@allegheny thanks for your post. I agree it is up to us as there is no silver bullet. Best to you, Mike C

@johnbishop
Thank you for taking the time to reply to my post.
I have found that over-the-counter 4% lidocaine topical cream helps at bedtime when significant burning is present in a localized area.

Do you have any information on the daytime use of compression stockings on nightime pain?

@neurojudy - I use compression socks during the daytime to help control leg swelling from lymphedema. When I take them off before sleeping, my legs do feel much better but I don't have neuropathy pain symptoms, just numbness and some tingling. I also use 4% lidocaine cream on my shoulders for arthritis pain and it really helps. Good to hear that it helps you too.