need opinions - help

October 2, 2009

Okay. So the muscle twitching lady is back and she needs advice. All of my blood

tests came back normal. I am twitching all over: shoulders, arms, back, chest

and having pain " episodes': thighs, hip sockets, back, rib cage. I am also

having face numbness on and off. The symptoms are of sudden onset. Not like how

my CMT symptoms have been progressing over the past 4 years. The doc thinks this

is my CMT at work, because of her research and the test results. She is a very

good doctor - one of the best. However, my gut says this is not CMT. It is

something else in addition because of how fast it has been coming on. She said I

could get a spinal tap to see if I had inflammation causing this, which means I

could get treatment. I think I should just go for it and get the spinal tap. I

want to do everything I can. But if many more of you have had similar onset of

symptoms, I might accept the diagnosis. Advice.

October 3, 2009

I am great on advice!

I believe in getting as many tests as possible -- even the -dreaded EMG.

Only through tests will the knowledge base on this disease grow, and if this

test can help your doctor learn more I think it becomes our legacy to

generations that follow so that eventually treatments for CMT symptoms become

common, and as treatments for symptoms become common, someone will an Archimedes

moment --hopefully not naked in the tub -- and the end of the beginning for

solving CMT may occur.

If we refuse tests, a bit of knowledge is lost.

For those whose EMG experiences lie somewhat to the left of Attila the Hun,

never have one over here in Italy. My last one took about 80 minutes including

the retest on my left hand because the licensed neurologist training to give

EMGs tested the hand with the polarity of the probes reversed! As a retired

teacher it truly was a Teaching Moment.

Regards.

Larry

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