Quote:
Originally Posted by Kitt
Yes, I developed symptoms later in life. I also know of another gal whose father was in his 80's before he had symptoms of CMT and diagnosed with it. The gal and her brother finally knew how they inherited it. Before that they were baffled. If her father had died sooner they never would have known.
I've been to many CMT support group meetings. Dr. Michael Shy was at one of them. He is an expert on CMT. He is at Iowa State University, Iowa City, Iowa. I have never seen him as a patient - wish I was closer. But there is nothing you can do about it anyway. Just deal with the symptoms as they come along.
There have been other doctors who know their stuff at these meetings as well. Yes, you have to do your own reputable research and stay up on it. And there are so very many types of it identified so far. Most who have CMT have the more common types. Thank you for your post.
|
Thank you for your prompt responses, but they keep triggering questions in my mind...have you had the VERY COMPREHENSIVE genetic testing done? My Neurologist had mine done about 10 years ago (hoping that I had one of the CIPD types that respond to IV globulin)..no such luck..then he told me when I saw him this week, that there is now MUCH more advanced genetic testing available now to identify MORE exactly what the type is, but Medicare doesn't cover the cost and he said it is VERY expensive. I thought about it after I got home, and wondered if I should have it done or not, for my family's information...but..I know that one daughter has it (confirmed by Kaiser Neurologists and comparing my lab results with hers)) and what good would it do my other daughter, and my grandchildren to know? Would just give them something else to worry about in their lives, you can't do anything about it, so I'm still "mulling it over"....Kaiser even told affected daughter that they would pay to have all blood family members tested if we wanted it, but (so far) we have declined their offer...if there was a treatment or cure", or preventative measures to take to avoid it manifesting, I would jump at having the testing done, but under the current understanding and treatment of the disease, I can't see the benefit of further testing..."yuh got what yuh got..manage it!"