Charcot Marie Tooth Disease

[AudreyBlumeneau]

In addition to my right lower foot becoming numb, dropping and right calf atrophy over the last 4 and a half years, I have also had trigeminal neurolgia (nerve pain in face) for the last four years; a severe loss of balance and tinnitis a year and a half ago and then a severe loss of hearing in my left ear four months ago. Has anyone else had similar symptoms that accompany the foot and leg symptoms?

[Brian B]

I know what you mean about the issue you are having with the lose of balance. I have had the same issues with that. The others you are having, I have yet to experience those symptoms. Have you ever had an almost complete lose of sensation to the of just tripping from walking up a step? This has happened to me on numerous occasions. I'm relatively new to asking questions about cmt, because I've only been experiencing these symptoms for the last few years. Mine came on later in life but it has turned me up on my head with all that comes with it. I want to learn more about what I've got and what I can do about it. My drop foot issues are getting worse and a local pediatrist has put me in the Richie Brace for drop foot. I know very little about what other symptoms I could eventually be experiencing other than the obvious. My toes have been curling for at about the last 10 years and that seems to be getting worse as well. I don't mean to complain, but I sure would like some insight on what's next. I always wondered why I couldn't stand on my toes, but I recently learned about that one as well. Any insight would be helpful
Sincerely,
Brian B

[cookie4020]

I have had the tinnitis for several years now & also have the numbness in my feet. usually only one at a time. also I get a strange irritating feeling (maybe what they call restless legs, on mine is feet) the only relief I can get is hitting my feet together or standing on them & pacing. very annoying! especially when I'd rather be sleeping or reading a good book. :)
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[karenduke]

Hi, I just discovered this forum today, and YES, I have had episodes of trigeminal neuralgia. I have rather late onset ( I'm 58) and my first CMT symptoms were 3 and a half years ago. I wear an AFO on each leg, and sometimes have pain shooting up my right arm. Nov. 07 was my first experience with trigeminal neuralgia, and it hit again the week after Xmas. My neurologist confirmed that diagnosis, and gave me some Lyrica samples in case it hits again. Unfortunately, she expects it to get worse. It has so far been the worst pain I've had associated with CMT. I guess my trigeminal nerve is becoming demyelinized. How do you deal with the pain?

[EZgoing]

There are several different sub-types of CMT that can affect the hearing and cause the Tinnitus. But, the same symptoms are sometimes caused by various infections and medications out there.. It's best to talk to your neurologist to try to get to the root cause if at all possible.

Brian B and all, tripping up (or down) the steps is very common for those of us with CMT. It's usually caused by the Foot Drop that you mention or the loss of Proprioception (the ability to tell where your feet/legs are in space). Have you ever had to move a foot to tell you where it is?? This is Proprioception (or the lack there of). It also is quite common in CMT.

http://medical-dictionary.thefreedictionary.com/Prioperception

pro·pri·o·cep·tion (prpr--spshn)
n.
The unconscious perception of movement and spatial orientation arising from stimuli within the body itself.


IF you want to learn more about what to expect with CMT progression, you might want to take a look at this site..

http://neuromuscular.wustl.edu/time/hmsn.html

It is very difficult to read some of the stuff at the site, but if you will read it all (and just understand what you can), you will find out some of the latest information on every sub-type of CMT known today. The site is run by Washington University and is updated often (usually weekly).

Another good site (and a bit easier to read) is run by Dr. Bird (one of the leading researchers into CMT).

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=cmt

I hope this helps some...

Ez