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Originally Posted by ElaineD
I've read about CMT a bit. Of course it's very complicated, but it doesn't seem like there are many treatments for the condition.
Did any of you have earlier family members with this diagnosis? Or that you think may have had this diagnosis but it was missed?
I know that Sjogren's Syndrome sometimes occurs in family members, and then people are alerted to look for it a bit earlier than they might have otherwise been.
I had never even heard of it, or of Primary Immune Deficiency Disorder, when they were diagnosed.
So many of us are wandering in the dark for so long until we find the right doctors and the right tests. And then there is a 'bit more light' but so often we have to provide our own light to each other.
Hugs, elaine
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As I stated in my other post about Charcot-Marie-Tooth Syndrome (CMT)- there is no cure/treatment at this time. You deal with the symptoms as they come along. There are no supplements, pills, etc. - no magic bullet. Much research is being done concerning CMT as I stated. A person who suspects CMT needs to be seeing a neurologist who knows CMT. They are out there. You just have to find them. CMT is complicated because there are so very many types of it. There can be hearing loss, phrenic nerve (diaphragm weakness), vocal cord involvement all depending on the type of CMT you have.
CMT was first given a name in 1886 by Jean-Martin Charcot. His colleagues were Pierre Marie and Howard Henry Tooth. Jean-Martin Charcot is known as the Father of Neurology. He also is responsible for giving a name to MS, ALS, Charcot's Foot (which is not related to CMT), and others. He was the first to describe these. One of his students was Sigmund Freud. Jean-Martin Charcot truly was a gifted man.
CMT has been in my family forever. I can trace it way back thru the generations. There is no doubt about it or any of my family members being misdiagnosed. If you know CMT you can spot it in a minute. I have known about CMT since I was five (5) years old and that's a long time ago. There were no symptoms that I had for many, many years. And I did not need a neurologist or EMG/NCV testing to tell me what I was experiencing. I knew. But I saw the doctor and did the testing anyway. Myself and some of my fellow CMTers in my area have had more than one expert neurologist who knows CMT at our CMT support group meetings. Much was explained, for those who didn't know, and much other information has been given.
Hope you find the answer to your problems.