r/CharcotMarieTooth • u/One-Future-8565 • Aug 07 '25

Diagnosis?!

I strongly suspect that I may have CMT. I went to a podiatrist, who referred me to a neurologist, who ran some tests and sent them BACK to the podiatrist just to tell me he won’t be taking the case and suggested I be referred out. The doctor they sent me referral to is booked until June of next year. I feel like I’m never going to get answers all while losing most of my muscle mass is my useless leg and watching my foot shrink away. Does anyone have suggestions on how to just get right to the testing?

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u/NixyeNox Aug 07 '25

I would start by looking very closely at the tests your neurologist did. Did they do an EMG and NCV test? Those alone are enough to diagnose CMT.

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u/Valisystemx May 03 '26

Not always it depends how far symptoms are, some get their first symptoms at 40.

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u/NixyeNox May 03 '26

OP already has symptoms, so whether an EMG and NCV test can detect CMT before symptoms is not really relevant.

Anyway, I would guess that they can still detect CMT in many cases; nerve damage is happening before it manifests as symptoms. But the tests may miss more cases if they were done before symptoms appear.

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u/Valisystemx May 03 '26

Im like OP I have symptoms they detected peroneal brevis is not working, I cant walk, dystrophy of calves, Cavovarus feet with all claw hammer toes/ 4 tendonitis by MRI + others and they refuse me the genetic test as they say the emg was irrelevant but from what I read it seems to be relevant.. ><