Living with Neuropathy - Welcome to the group

My feet are numb and tingling and ache goes up my legs too

I’m sheridana and I need help with my numb feet

Hi @sheridana, Welcome to Connect. I also have numbness in my feet and legs with my idiopathic small fiber peripheral neuropathy. I'm fortunate not to have the terrible pain that most folks with neuropathy have and it sounds like you have similar symptoms with your neuropathy. You might find the following discussions helpful:
-- Neuropathy with numbness: https://connect.mayoclinic.org/discussion/neuropathy-with-numbness/
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

What's the main difficulty you have due to the numbness in your feet? Mine is poor balance.

I have had 3 EMG's and some genetic testing because my father has many of the same symptoms. Best diagnosis so far is idiopathic axonal polyperipheral neuropathy.

Welcome @dwsouthwick, Looking for support and what helps is the very best thing we can do to help ourselves when they tell us there's no cure we just have to wait to see how it progresses. That's really what brought me to Connect back in 2016 after being diagnosed with idiopathic small fiber PN. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

If you haven't already seen the site and you want to learn more about Neuropathy, the Foundation for Peripheral Neuropathy is a great place to start learning more - https://www.foundationforpn.org/. They also have a YouTube channel where you can find their many webinars on different neuropathies and treatments - https://www.youtube.com/@foundationforperipheralneu4122.

@artemis1886 has mentioned having axonal sensorimotor polyperipherial neuropathy and may be able to share some experience with you. Have you done any research on complementary or alternative therapies for neuropathy?

A number of MRIs, a Neurosurgeon as it was thought to be spine problems, he was the first to say neuropathy. He sent me to a Synapse Neurologist his test were NCS and EMG he agreed but could find nothing amiss, he then sent me to a Haemotologist with some suggestions re white blood cells and protein. He took I'm sure half my blood and also agreed with Neuropathy but also could not find what the cause was. So here I am a idiopathic. @wenner

My spine surgeon told me that if the surgery did not fix the issue that I should look into a Charcot-Marie-Tooth diagnosis. Even back then he thought it was CMT. My genetic testing thus far has not confirmed a CMT diagnosis, but I have many of the similar symptoms.

I have not done anything for alternative therapies, other than ALA 600mg daily.
Oddly enough, I manage a Neurology clinic and have had minor conversations with my providers, however, their specialty is migraine headaches.

I can only advise you to request physical therapy and to keep moving. Both my neurologist and podiatrist were not encouraging. No advise other than supplements. Idiopathic small fiber peripheral neuropathy without pain. I had to ask my primary for physical therapy and it was a great help. I can get around safely, albeit a bit more slowly, with a cane. I made a great effort to return to volunteering at the local animal shelter and, while I cannot do all the physical things I did before, like walking pitties, I can do laundry and dishes.
You will have to push and advocate for yourself. Doctors apparently think they can only treat pain, if you have pain. They do not look at the whole person and how this diagnosis affects us. Good luck.

@johnbishop I called WALKASINS after my ENDOCRINOLOGIST told me of a patient who has had great results with them. He is a VET so he is covered by his Insurance , I am not but have BC BS they told me the cash price is around $9000. 00 and she would get back to me after talking with BC BS, waiting !

Tim