Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 I hope your not letting this get to you. I think if this was true about CMT it would be very well known by neurologists. I have never heard of this. I have seen my fair share of doctors and even had an MRI. My brain was very healthy. Many doctors do not know about CMT and assume too much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 Jackie, Well, no, I haven't heard of a shrinking brain associated with CMT. I remember two papers in particular from last year about white matter lesions found on an MRI in a person with CMT. The conclusion was that this might depend on an autoimmune mechanism, not yet clarified. The other paper was about the Brain and CMT Type X that showed mild transient white matter lesions allied to CNS symptoms. The conclusion on this stated " This is of potential interest, as Cx32 is widely expressed in both peripheral nerve and the brain " . As for my own brain, after a horse accident and concussion followed by an MDI, the docs found enlarged brain ventricles. I had no idea what that meant at the time and forgot about it. I've been fine ever since. Then there was the paper by Goetz on Jean- Charcot and the aging brain. Arch Neurol. 2002 Nov;59(11):1821-4 I read this, but can't remember what it was about. I think it was more about Charcot's brain and not the CMT person's aging brain, though. In the year 2000, there was an Italian study where the authors describe a unique combination of cranial nerve deficits in one member of a Charcot-Marie-Tooth 1 family carrying an EGR2 mutation (Arg381His). In 1995, there was a paper on CMT/HMSN associated with cerebellar atrophy:a new disease. J Neurol Sci. 1995 Nov;133(1-2):140-51 A long answer to your short question! Anything I have seen in past newsletters just encourages those of us with CMT to use our brains (our best muscle) to think about making our lives easier. Remember too, there is still much we don't know about CMT, the brain, etc. I hope you won't let your girlfriend, the self-styled expert, continue to diagnose this woman. And sorry I am not much more help on this here. Maybe if I think about this overnight I will be of more help. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 and Gretchen, It came up because she really wanted me to meet her mother but then felt like I would get too upset. I asked her why would I be upset meeting someone with CMT and that I knew that she would probably not remember me. It is then that she told me about the brain. It was kind of strange; because of the fact that she thought it would upset me is what made me start thinking about something that had never crossed my mind. I am not upset about it. Sometimes I think I would look forward to not remembering! (I am really just kidding and do not mean to make light of it, but I do handle my problems with humor!) I think it is those of us that do not have CMT are the ones that jump to conclusions, such as family, friends AND doctors. Thank you for giving us a forum to dispell any rumors! Jackie Quote Link to comment Share on other sites More sharing options...
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