CMT, HNPP, and my new news...I'm confused

April 24, 2007

O.K. everyone, I think I need some help with posting. First of all,

I want to tell you all what happened last week. I went to a

neurologist out of the University of Miami who teaches new doctors

about neurological problems and I was more than impressed. At first

I almost walked out and thank God I didn't.

It seemed like they wanted me to sign my life away, but I understand they use

all the information they get to help others and new doctors. He did a test on

me which surprised me after the EMG's I went through. Seems to me like I have

HNPP also.

And from what I understand, and what he told me, it makes all the sense in the

world. He did the thing when he hits my knee with the hammer and nothing as

usual. Then he asked me to grip my hands together and pull apart (with my elbows

pointing outwards) and son of a gun, he hit my knee again and my left knee went

flying. You could tell he knew what he was doing.

He looked at my EMG chart and also asked another colleague what he thought and

everything seems to be more of HNPP with the combination of CMT.

By the way, the segment they are doing on CMT will be on Wednesday

because of the children getting killed in Virginia (God Bless

everyone).

I forgot to ask the main question, " Who on here also has HNPP or is it

given....or is it hard to tell the two apart? " He wanted to take fluid out of

my spine, but Medicaid won't pay for this test which is in the thousands. He

said forget about it anyway, but to make sure I don't cross my legs, lean on my

elbows (which I have a tendency to do at night watching TV, and making sure I

sleep in the correct position) so I tell Jeff to unwind me when he gets to bed

at night. I can feel it every morning when I get up and it's scary. There is at

least one part of me that has pins and needles...Is anyone out there like me??

That one time I woke up and lost my right hand for 6 months, scared the hell out

of me and I hope it doesn't happen again. Sorry I took so much of everyone's

time.

in the keys.

Recommended Posts