← Return to New to neuropathy, terrified and seeking advice from you guys

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@johnbishop

Hello @tom01255, Welcome to Connect. It can be a little scary to have a skin punch biopsy and have a neurologist tell you that it gave you no clue to the cause. You are not alone. Many of us have idiopathic small fiber neuropathy and it can be difficult to pin a specific cause when there are so many. I have not had a skin punch biopsy but did have a nerve conduction test along with physical exam. My neurologist thinks mine is mostly likely genetic but doesn't really know. I think what might be helpful for you is to learn as much as you can about your condition and possible treatments available. Two sites that really helped me learn more were:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Here are a couple of discussions that you may want to scan through to see if some of your symptoms match:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

You mentioned it started in the toes and now has spread to the arms and hands. Do you have pain or is it just numbness and some tingling?

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Replies to "Hello @tom01255, Welcome to Connect. It can be a little scary to have a skin punch..."

Thank you for all the great information! I will check out those links. I have tingling and pain. This afternoon I took the dog for a brisk 2-mile walk, and afterward felt very tired and weak in my legs. I'm really worried about ending up disabled.

John- do you have any links to neuropathy and balance issue? My balance is “off”, if I pay close attention to foot placement and go slow, I can enjoy a daily walk (two times around the block). I took a hard fall two days ago- I think I caught a toe on a sidewalk square edge, no warning, suddenly finding myself crashing to the ground, hit my head, shoulder, knee hard, off to the ER, no broken bones, no concussion signs, but ordered to follow concussion protocol for three days.
Some members of my family are insisting I stop walking, but I can’t face that. I’m thinking a cane won’t help as the loss of balance comes so suddenly that foot catches something. Any ideas?