|
Grand Magnate
|
|
Join Date: Aug 2006
Posts: 4,440
|
|
|
Grand Magnate
Join Date: Aug 2006
Posts: 4,440
|
Quote:
Originally Posted by diagnonsense
There are no neurologist that specialize in CMT or really any of the neuropathy disorders here.
They are all general neurologists.
I wanted to stay locally because gas prices are high, and I JUST got a job.
(like I don't even start till next week)
So, thats why I get general testing.. because they don't know top from bottom.
I get the same tests over and over and over. (This will be my 4th EMG in 2 years)
They repeat the same blood tests even with knowledge of the results.
I get tired of going in the same darn circles.. but I don't feel like driving 3 hours and waiting over an hour to be seen at Mayo in Rochester.. which would be the closest thing to a "cmt expert''.
|
I can't blame you for not wanting to drive that far. I hear you. At the Mayo Clinic in Rochester, they do have neurologists who are experts when it comes to CMT.
Do any CMT neurologists who are experts ever come to a hospital near you? Just curious. That's who I saw years ago when one came to the local hospital. However, I already knew that I had CMT - family history going way back. My symptoms outwardly were really nothing at the time. But the symptoms have progressed over the years which is normal. CMT is slowly progressive no matter what we do.
At any rate, I know that DNA blood testing is expensive but it could rule CMT in or out. As I said, Athena Diagnostics does have a plan to help with the dollars. I have not had DNA blood testing. That would give me the sub type. I know the type I have thru EMG/NCV testing and family history - CMT1. I do not need to know the sub type at this time unless they come up with a cure/treatment for CMT. That would be for CMT1A (A is the sub type) which they are doing much research on including Ascorbic Acid trials at the present time. They are doing them for CMT1A as that is the most common type.
There are so many types of CMT that they have found. 50 identified so far and no end in sight. 22+ types that they have DNA blood testing for so far. Symptoms of CMT can vary greatly even within the same family. Symptoms can become evident when you are young, old, or in-between or they may not be that evident at all.
I do hope you get some answers and I truly understand what you are saying about having to travel so far. Take care and keep us posted.
__________________
Kitt
--------------------------------------------------------------------------------------------------------
"It is what it is."
|