Living with Neuropathy - Welcome to the group

Hi Rick @sam31, Welcome to Connect. I went for 20+ years with the numbness starting in my toes but never had any associated pain. I'm 78 now and the numbness is around the ankles and feet. There are a couple of discussions you may want to read through and learn what others have shared helps them.

Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

When I first discussed the numbness in the toes, my primary care doctor told me it was probably nerve damage but they could run some tests to determine if that's what it was. My next question was if they find out it's nerve damage what can you do to help? His answer was nothing can be done for the numbness. The medications are all to treat pain symptoms. So, I waited 20 years and the numbness felt like it was just below my knees and I was having the same concerns and questions as your asking now. I had the nerve conduction testing and met with the neurologist for a physical exam and was diagnosed with idiopathic small fiber peripheral neuropathy. I went home pretty disappointed when getting the same answer about what can you do to help the numbness --- nothing can be done. That's pretty much my story and how I found Connect while searching for a local support group. I posted my story and what has helped me some in the discussions above. Here's my neuropathy journey story - https://connect.mayoclinic.org/comment/310341/

While you may expect the numbness to continue up your legs (same thing my neurologist told me), there are things you can do to help. I'm not sure I would have additional testing unless I believed it wasn't neuropathy. My neurologist said about 20% of people with neuropathy don't have pain as a symptom and to consider myself lucky. So, I made a decision to learn as much as I can about neuropathy, available treatments, and things that I can do myself to help my situation. A couple of my go to websites for learning about neuropathy:

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/
-- And for medical research searching: https://scholar.google.com/

If you can walk and run, keep doing it 🙂 Have you made any lifestyle changes to help?

Hello @bbsinflorida, Welcome to Connect. I have no medical training or background but had a similar discussion with my primary care doctor who wanted to put me on a statin for high cholesterol. I had already read about statin induced neuropathy and did not want to make my neuropathy any worse than it already was so I declined and said I would work on lifestyle changes to lower my cholesterol numbers. Here's a few discussions you may want to read and learn what others have shared.

-- Statins cause peripheral neuropathy?: https://connect.mayoclinic.org/discussion/statins-cause-peripheral-neuropathy/
-- Connection of statins, rosvastatin, with neuropathy of feet?: https://connect.mayoclinic.org/discussion/connection-of-statins-rosvastatin-with-neuropathy-of-feet/
-- Is there any connection with statin use and neuropathy?: https://connect.mayoclinic.org/discussion/is-there-any-connection-with-statin-use-and-neuropathy-i-have-had/

10 Natural Ways to Lower Your Cholesterol Levels: https://www.healthline.com/nutrition/how-to-lower-cholesterol

Has your cardiologist recommended any alternatives to medications to lower your cholesterol?

Thank you @johnbishop - I really appreciate the information. He has no knowledge of this subject and said he would need to review related studies before proceeding with something different. I will review the posts you cited and prepare a "background paper" so he can come up to speed. I am surprised that I had to "find" the statin/PN potential relationship on the internet and my doctor was unaware, but it is what it is. My medication plan is with Express Scripts and I have three options with them: Fenofibrate, Repatha, and Praluent. If anyone has experience with these as alternatives to statins - or any other medications - then I would certainly appreciate any insights. Thank you!

Oh wow, I had no idea these procedures were done to diagnose any kind of neuropathy! Would you mind telling me what your symptoms are/were? Thank you!

leg swelling pain when walking

Sure. Last June it started with just numbness in my left foot. No pain. By November I had numbness in both feet with pain in my arches, electric shocks (only in right foot) burning sensations in my tailbone area. By Jan I was having sciatic pain down both legs. After EVERY test in the book to rule out things (minus spinal tap) I was just dx this May. In the last month, my symptoms have “quieted” but not gone away. Every day is a mystery of how I will feel.
If you don’t mind as well, What type of neuropathy are you dx with and what are your symptoms?

Hi John,

Thanks so much for your quick response. After 20 years, are you still without pain and can you still walk/run normally?

You mentioned there are things I could do to help or delay the numbness. Are there exercises for this? Supplements. etc?

Thanks so much for the links, I'll check them out.

Blessings to all,

Rick

Hi Rick, I'm still without pain from the neuropathy but do have some lower back problems not related to the neuropathy and have had my right knee replaced. My running days are long over and I have to be careful due to balance issues but I don't have any pain walking and still am able to drive OK. The supplement I take which help me some are the Protocol 525 supplements mentioned in my neuropathy journey. Weight loss, eating healthier and working at removing all sugar in my diet (fat chance of me going to zero sugar - I love chocolate) all have helped.

Here's another good discussion on exercise...
Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/

Hello @carlyschneider, Welcome to Connect. I see that you recently joined and shared that you were diagnosed by a skin punch and an antibodies test which showed higher level of TS-HDS antibodies. Are you able to share what diagnosis you were given and what treatment was recommended or started?

Hi Sean @shayes controlling your diabetes well with exercise and diet should not make your neuropathy worse. Is your hemoglobin A1C result low within range? Are you managing your diabetes with oral medication(s) or injections? I would talk to the physician who is managing your diabetes. Discuss what more you can do to stabilize your diabetic neuropathy. Is there a possibility of medications to help you with the neuropathy pain? Your physician would know of your medical history and would be better able to advise you. Wish you well.