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role of ongoing medical testing for idiopathic peripheral neuropathy

Posted by badgerguy @badgerguy, Apr 14 4:54am

Hello,

I am in my early 60s and was diagnosed with idiopathic peripheral neuropathy (IPN) in 2020. I am fortunate that I have very little pain associated with it. It exhibits as mostly numbness, weakness, and muscle twitching. It has progressed slowly, but I have noticed its progression more lately.

I have often wondered what role ongoing medical testing and tracking should play with a diagnosis of IPN. I have only seen one neurologist since 2020 (~2023). I got the impression from the neurologist (not Mayo) that I was wasting his time by being there given that I had IPN. He didn't seem to take my questions very seriously.

So I am interested in others views/thoughts. Here are some questions to get the discussion going.

Is there their value in regular appointments with a neurologist if one has IPN? If yes, what purpose do they serve? What is an appropriate frequency? What types of ongoing testing is appropriate (EMGs, other)?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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cynda52 | @cynda52 | Sep 7 1:11pm
In reply to @celia16 "@cynda52 , I don’t really have pain, just a slight numb feeling on the bottom of..." + (show)
Profile picture for celia16 @celia16

@cynda52 , I don’t really have pain, just a slight numb feeling on the bottom of my feet. So I don’t take meds. It’s lessened though since it started in 2023. And, I’m not sure of the cause. The EMG test was negative . I saw GP, neurologists, endocrinologist, rheumatologist, orthopedic doctors, podiatrists, etc. None were sure. So….was diagnosed with B12 deficiency, long covid and I have long term type 1 diabetes. So far, I treated the deficiency and work at keeping diabetes managed. Also, exercise, stay active, and stretch feet daily. They don’t feel as tingly as they used to. Recently, my rheumatologist told me it was reversible. So, I’m encouraged.
The orthopedic doctors I saw didn’t think mine was spine related, though I am not certain if that.

Do you believe your symptoms are due to that?

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@celia16 Your post is helpful because it lists the numerous specialists you were referred to with nerve pain. I’m going to try a podiatrist with specialty in neuropathy. I was mistakenly looking for one doctor, one diagnosis, and I am getting the picture that there is no one answer—or any answer.

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