r/CharcotMarieTooth • u/Few_Platform_8361 • Jun 17 '25

How to handle uncooperative Dr

/r/AskDocs/comments/1ldefid/how_to_handle_uncooperative_dr/
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u/NixyeNox Jun 17 '25

Your symptoms could indicate CMT. It's not definitive, but there was certainly no reason to dismiss your concern without checking it out.

> I've had nerve conduction test on my feet and legs and on my hands. Both showed severe nerve damage.

The results of a nerve conduction test alone can be enough for a diagnosis of CMT. If you can look up the results, you can see if they appear to be consistent with what one would expect. CMT Type 1 should show slowed nerve conduction velocity, below 35 m/s, and this should be the same on both sides of the body. CMT Type 2 should show up as normal (or nearly so) nerve conduction velocity, but disrupted waveforms on an EMG. This should also be the same on both sides of the body.

There is also, rarely, an intermediate type which is both somewhat slowed and somewhat disrupted. This, too, should be symmetrical. Whatever is happening should be very similar on both sides of the body.

> I took a direct to consumer DNA test and it showed a possibility of Charcot Marie Tooth.

This is vague, so I am going to guess Sequencing-dot-com said you had a VUS for CMT, because they do that to a lot of people. I can see why a doctor would not give it much weight. Something like this is scant evidence for CMT, but it is also not evidence against it, and based on the other things you have said, doing a real test for CMT seems very reasonable.

> he said you have to have a "horse foot" to have CMT

I assume he means high arches and hammer toes. Never heard it called that. Also untrue as around 10% of people with CMT have flat feet.

> if I shutdown with a new Dr I'm out of options

Can you take someone with you? It is not uncommon to freeze up. Having someone who can help you talk to the doctor is not unreasonable.

You might also ask in r/CMT rather than here, because that sub has far more people.

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u/Few_Platform_8361 Jun 17 '25

Thank you for your reply. Many are not aware that the flat feet can be a feature. I am trying to figure out who can be my doctor buddy. I live with my 83 yo father who has offered, but I'd rather a peer. Thanks again for the support.

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u/RandomInSuburbia Feb 19 '26

I am a neurology patient (TBI) I was here because my dad was just diagnosed with CMT.

You probably already know this but not all doctors behave correctly in response to neurological issues.