My primary symptoms are a numb sensation from head to toe 24/7 which definitely intensefies with pressure, laughter or embarrassment, and heat(ie. sun) This all began in April '05. First it was only on my scalp and slowly progressed down my spine and face, then to my arms and legs. I visited several doctors in different specialties and NO ONE could say what was wrong but were all happy to prescribe something to which I said, "No thanks, I'd like to have a diagnosis first."
Thanks to the persistance of my OB/GYN and husband I kept seeing different doctors and reading as much as I could. MY husband found this forum and helped me sign up. I was reluctant at first but when I realized there were others experiencing similar symptoms I felt this must not be "in my head."
Thanks to the reply of several veteran members I took their advice and went to several websites for hnpp and CMT which were informative. There is a genetic test for these disorders. No cure but it would be nice to have a name for what I am experiencing and not be thought of as "crazy."
Thanks to the information on the websites, I was able to convince my neruologist (#3) to order the genetic test for CMT.
Thank you for saving my life, mentally anyway. I did have the genetic test and was diagnosed July 9 with CMT4F. It is one of the rarest forms and I have a variation of "unknown significance."
I saw my NEW (#4) neurologist Thursday, August 9. I received exellent care and attention at Southwestern Medical Center. The group specializes in CMT and so far I have been quite impressed with the level of care and commitment shown to me, FINALLY!!!
God Bless you all,
Keep the faith, hope and perseverance!