NeuroTalk Support Groups - Rare Undiagnosed neurological condition

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- - Rare Undiagnosed neurological condition (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/183061-rare-undiagnosed-neurological-condition.html)

Quote:

Originally Posted by Kitt (Post 952845)

Hi, CMT progresses no matter what you do. There is no magic bullet as there is no treatment/cure for any type of CMT at the present time. However, much research is going on and hopefully one day there will be. Here is a site showing a lot of types of CMT. However, there are over 50 types at the present time and the number is growing.

Another list:

I hope you get an answer. A neurologist who knows CMT might be very helpful. I'm not certain if that is who you are seeing although your neurologist does sound informed. Take care.

Thanks for that, I've had a look at those pages, its so confusing, there are so many different types.

My neurologist is very good indeed, every doctor I have seen has been very well informed on these genetic disorders, so I'm very lucky. I've heard bad stories about some neurologists...

Quote:

Originally Posted by ConsiderThis (Post 952959)

Wow, you have a LOT of pictures.

I thought you might be interested to hear that last year I could not lift my feet. Similar to when I had tetanus and it took me three steps to cross a foot-square Saltillo tile. I was really worried. But a lot of rest and very gradual exercise has made for amazing improvement.

Have you checked out the symptoms of low vitamin B12? B12 is often a factor in neurological problems.

Tetanus, as an aside, is a central nervous system disease.

Hi, thanks for your reply. I have been tested for vitamin b12 and diabetes etc....but my tests were all normal.

Unfortunately due to the appearance of my feet, my doctors are quite sure it has to be a genetic mutation of some kind. I believe many of these neurological genetic conditions cause distinctive foot deformity, and when both feet are deformed like mine, it seems to be even more likely to be a genetic thing. I'm all too aware of this after seeing various doctors who have advised that this strongly points to a genetic cause.