Ben just posted this on facebook, and I immediately thought of my friends here, and wanted to share this with you. Sending my very best to all parents of children with a rare disease.
I was diagnosed at the age of 12 years old. Here in my 50’s told I do not have CMT and have never had it. I am at a loss to think after all these years to be told I do not have CMT .
Your frustration must be tremendous! There is no good reason why a decision cannot be reached on this, I think by now you have the best idea here. My general practitioner has always told me to listen to my body, and I have always found this to be some of the best advice ever given me!
I am ever hopeful that a decision and diagnosis can be obtained, and better treatments, and better yet a CURE will come about for all of my friends who suffer CMT!
Please know you are ALWAYS welcome here in the group. It is your support group with or without a diagnosis! I hope you always feel part of the group, and will continue to contribute! I do not have CMT, but am one of your strongest advocates, just ask my Doctors! Thank you all for allowing me into your world.
Wishing you well,
CM, your children and grandchildren are most fortunate to have your guidance and support! So is the group!
Thanks a thousand!
In my 17 yrs of confirmed diagnosis, I've seen and heard so much to confirm that doctors and nurses are not as knowledgeable as they want to think or believe. Since it's only been recently, that CMT has even been addressed in medical school or training it stands to reason you might have a doctor tell you, that you don't have it; especially if he isn't familiar with the signs, symptoms and variants of CMT. New mutations are being researched and discovered all the time; When I was diagnosed in Oct.1997 there were 7 types known; now there are over 59 and more being researched. Just b/c you don't fit the doctors idea, exposure, or understanding or even limited knowledge doesn't give him authority to arbitrarily tell you after 50 yrs that you do not have it. We HOPE you do not have it but we sure hope being i this group you can learn more and maybe seek another opinion to determine what your body is experiencing.
you most certainly have things you can share that can be helpful here and most of all friendship with anything in life can sure make your life more enriched! Thank you for being part of the group and sharing!
~~~~CM. . . CMT doesn't have you, even when you "might" have CMT
I had NO idea there are currently 59 types of CMT! This is unbelievable! I think I've read quite a bit about CMT, but never found anything that recent apparently! Good to know! The more they know, hopefully the sooner better treatment and cure!
Thanks for your contribution, CM!