Quote:
Originally Posted by Kitt
I know a gal who has CMT and also her brother. She is worse off. They never could figure out who they inherited it from or how else. Their mother was fine and so was their Dad. However, when their Dad got to be 80 years old he was diagnosed with Parkinson's disease. After a bit they checked further and found that he had CMT and not Parkinson's. So he was misdiagnosed. The gal and her brother had their problem solved. They now knew how they got CMT.
CMT symptoms can become evident when you are young, old, or in-between. Or they may never be that evident. People are misdiagnosed to this day. Symptoms of CMT did not come along til later in my life. But when they did, I knew what I was going to be dealing with from family history. I did not have that many noticeable symptoms at that time. No balance or gait problems then either. Symptoms vary greatly even within the same family.
As far as your balance and your gait not being affected, that can come along later. Can you stand on your tiptoes and/or your heels? Hope you find an answer soon.
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Kind of feel sorry for the Doctors and researchers of hereditary neuropathy, they just can't get a handle on it... So many different symptoms, severity and time factors! I have had a lot of leg problems, bad cramping in the calf muscles and arches. Seems like enough indicators, to make a DNA test worthwhile. Since I am a cash patient, I am not having to get approval from a insurance company. With the DNA testing getting cheaper, $1,000 for the whole DNA chain, that becomes more affordable, and will be a good diagnostic tool. The companies testing one test for more are not going to stay in business. I am still thinking of just having my Rheumy order the test. The punch biopsy is going to be $500, so if that can be avoided... Though it might be good for a bench mark on the progression.
Thanks Kitt, very informative!