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Looking to connect with people who have non-diabetic neuropathy

Neuropathy | Last Active: 8 hours ago | Replies (915)
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@larry4343

Hi @misu,

You are right not to accept your diagnosis until you’ve had a complete work up from a competent neurologist. You should see a neuro-muscular specialist if possible, and get all the standard bloodwork, plus EMG, and MRI. Idiopathic is not a diagnosis, it’s a failure to find a diagnosis. That happens, but make them do the work before they give you that label.

Good luck.

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Replies to "Hi @misu, You are right not to accept your diagnosis until you’ve had a complete work..."
paktoledo | @paktoledo | May 3, 2023

Thank you for your insight! Pat

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bunnybear | @bunnybear | May 4, 2023

I got the diagnosis of idiopathic neuropathy in both lower legs and feet after exhaustive tests and a thorough workup at Southwestern Medical School. That was 15 years ago and thankfully it has progressed only slowly. At night it increases severely when I lay flat. My feet eventually feel like burning ice. A light pair of socks helps if light bedcovers don’t suffice. It goes away about 20 minutes after the sock treatment. Then I MUST take the socks off or I wake up feeling unbearably hot. Welcome to old age!

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misu | @misu | May 11, 2023

As much as I agree, I live in Canada where we have "free" health care, and sometimes we only get what we pay for. I requested tests and was ignored, as my family doc agrees with the "diagnosis." I'm on wait lists to get a new doctor, but that can take years (if it happens at all). I need an American husband! 😉

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