MSA dx-diana

[Guest guest]

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So sorry to hear of your running about and not getting reliable

answers. We also had a similar experience. In 1997 my husband Jerry

was diagnosed with Cerebellar Ataxia and we were told he would have

some problems with speech and balance but would most likely live a

normal life span as the disease would plateau. Of course I am here

typing this because it did not plateau and we went about looking for

answers. As more problems began to appear we traveld to NYC to

Columbia Presby. Movement Disorder center for another opinion. After

two days of tests (first Neuro had done no testing) we were given the

dx. of MSA. That was in 1999. Records were sent back to our

physicians yet our Neuro at home would still not say it was MSA but

in 2000 changed his dx to OPCA and he had still never even taken a

blood pressure. Although Jerry's blood pressure seems find after he

is sitting up in his chair (when most dr take BP) his BP drops

significantly (from 125/72 to 97/57) when he first sits up from bed.

He does not feel faint nor does he complain. When he first gets into

bed at night his BP elevates from 125/72 to 167/95 or more and his

pulse is often between 92 -107. You might want to get a cuff and

monitor this yourself as we have never been to a dr that says his BP

is anything but " normal " but they do notice his rapid heart beat,

when it is taken, and never does the Neuro take either. This last

time we visited our Neuro I had listed all his problems.

Incontinence, BP (my records), Speech, balance, Choking, Sleep Apnea

(worse since the dx), Respiratory Failure (3/02) from pneumonia most

likely caused by aspiration, Cold hands and feet, swollen legs and

numerus other problems. Guess what he said, " Well, I guess we have

to say it is MSA now. " Go figure. So here I am on this terrific

list knowing that we won't all know for sure until autopsy but we go

with the dx and do the best we can helping one another. I am sure

there are great physicians out there but I have yet to find one in

AZ. I think Pam is correct to suggest you sign up for the research

that Dr. Shults wants to do with MSA. At least it will be well

monitored, well directed, well focused and welcomed by all those with

MSA, their family and those who have lost loved ones to this

disease.

Good Luck, Hugs, Jan