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Originally Posted by Kitt
Was your father ever "diagnosed" with CMT1A? As far as having large calf muscles but weak, that is normal too with CMT. You do not have to have thin calves, hammer toes, high arches, etc. Your feet can look normal but you can still have CMT. It depends on the muscles that are affected.
CMT symptoms vary greatly even within the same family. If you have EMG/NCV testing that should tell you if you have CMT1 or CMT2 but not the sub type. When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal but the strength of the signal is reduced. All forms of CMT are either demylinating or axonal in nature. CMT is a multi-gene disorder and so there are many different genes that cause the disorder. There are over 70 kinds of CMT identified so far. A neurologist who knows CMT should be able to tell if you do indeed have CMT with EMG/NCV testing and whether it is of the most common - CMT1 or CMT2. However, if your father was diagnosed with CMT1A that is what would be in the family.
DNA blood testing is expensive so that is a concern. As I said, EMG/NCV testing should be able to tell you if you do have CMT1 or CMT2.
CMT is progressive no matter what you do. You can have symptoms of CMT that are evident when you are young, old, or in-between. Or you may never have symptoms that are evident but you still have it. No one, not even a doctor, can tell you how you will end up with CMT. Hope you find the answer.
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Unfortunately, I have no medical records from my Dad, he went to Navel hospitals for his Dx and never told my Mom. I remember him telling me that his doctor told him that the high arches were tied to the PN, I didn't know about CMT at the time, so I remember thinking that was kind of odd, that high arches would have anything to do with neuropathy. This was pre-google when you just didn't have information handy! I know he had hammer toes and high arches like mine. He told me that the nerves felt like a fuse slowly burning up his leg, then he lost all feeling of his legs. I did acupuncture on them one time, and he could feel some sensation right afterwards.
If I need further diagnoses beyond the local Neurologist, I will just have to commute up to Los Angeles. I still find it strange that there are no CMT specialist in San Diego. Seems like Scripps would at least have one doctor.
The last time I consulted with a Neurologist he ordered the DNA test, but he told me that even if I tested positive there was no cure. I thought they just wanted to try out there new diagnostic tool at my expense! Now that I have read more into it, it would make some sense to find out what I have...
Thanks for the info!