Connect
← Return to Living with Neuropathy - Welcome to the group
Discussion
Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 4 hours ago | Replies (6017)Comment receiving replies
Hi, my name is Rick. I started having some numbness in my toes in 2015 when I was 72. The numbness gradually continued into my feet. The feeling was like I was wearing socks all the time.
In the past year, I can feel some numbness and maybe some weakness from my knees down. I have never had any pain or burning and I can walk/run without any issues.
A neuro doc diagnosed me with PN after minimal testing. I have not had any type of testing to further define the type of PN I have.
With this limited information, are their any thoughts the group can offer concerning my condition?
After 6 years of numbness without any pain, should I expect the pain to start or is there a PN type without pain?
Should I expect the numbness to continue up my legs such that I will need assistance to walk?
What suggestions do you have for me to get further testing?
So glad to find this group. Wishing everyone well.
Rick
Replies to "Hi, my name is Rick. I started having some numbness in my toes in 2015 when..."
Connect
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?