Quote:
Originally Posted by boiler1993
Susanne C - because of the normal emg is it more likely that i would have type 2? Also did u have genetic testing or how are most people diagnosed. Finally, the symptom that made me finally decide to go to a neuro is tingling up my legs...is this a symptom? thanks so much
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Type 2 does show up, not so much on the EMG, although mine was abnormal, as on the NCS, or nerve conduction study. The slower responses show axonal damage. Mine were both done by extremely well qualified neurologists, the second set at Johns Hopkins, required almost an hour of heat lamp treatment before I was warm enough for the test. Are your hands, feet, and legs often cold? This has been a long standing symptom for me.
Did they do a nerve conduction study, or just an EMG? I believe you have to have muscle deterioration before it shows up on the EMG, but I am not sure. Type 1 is often earlier onset than type 2, but my half sister wore leg braces from childhood for foot drop, so it really varies wildly.
Other than the clumsiness and tripping, I could never run or skate or anything like that, which seems to argue against your having it, restless legs and pins and needles were a symptom. Numbness started in my toes in my early 30's, scared me, I thought it meant diabetes, so I didn't mention it to my doctor until it passed my ankles in my mid forties. It is past my knees now at 50, so has speeded up lately, along with the muscle atrophy.
Most people are diagnosed on family history, although genetic testing is becoming more popular. It is also quite expensive and not fool-proof. My neurologist just kept saying it looked like a hereditary neuropathy. The axonal diagnosis was made immediately based on the NCS. I forgot about my family history at first because I have never been in contact with the side of the family that carries it.
I was sent for the HNPP test because I do have pinched nerves at all the arm joints, but it came back negative. I elected not to have the rest of the Athena genetic tests done because there is no treatment anyway, and there are not tests for all the variants. My 27 year old son has definite symptoms now, and would like me to get the testing, but our insurance has changed and I will wait until a year when I pass the deductible.
We are not saying that you have CMT, only that with an unexplained neuropathy in the family it is a possibility. May I ask how tall you are? Extreme height can aggravate and accelerate neuropathy symptoms. I am 6'2" and my son is 6'4".