Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Welcome Trina, It is a shame you missed out on fun at Disney world when you could have used a scooter to get around. There is no one set " treatment " for CMT, but there are alot of " tools " to make life more manageable; orthotics, AFOs, scooters, plus many items for home use, etc. CMT seems to affect us all differently and we have different needs. Sounds like you need a better informed doc and one that can give you a thorough neurological exam, take family history, and at least order the DNA test. I don't understand your doctor's refusal. I would suggest calling MDA, and asking to see another doc. Also ask for copies of your medical records. (example, EMG/NCV results, and any other tests done) I understand your depression, although I would be more angry than depressed. I went to an MDA clinic once back in my 20's. After 3 hours of waiting just to be seen by a doc, I about to leave when the orthotist wanted to measure me for AFOs, which I did not need. I left (it was lunchtime) and never went back. I have had better care from private neurologists ever since. Here is a good link for CMT information http://www.neurologychannel.com/charcot/ There are also other CMT links at /links ~ Gretchen Quote Link to comment Share on other sites More sharing options...
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