RE: Digest Number 980

[Guest guest]

Boy Diane, Dale and Jeff aren't related, are they? He's had more CT's,

MRI's and bone scans in the past year than anyone I know, and it's almost

always brain and spine. Our doctor also told Jeff that he didn't always

exhibit the " classic " signs of MSA. I emailed the group a few days ago

asking for some input on the doctor's last statement that since Jeff's

blood pressure went up when the doctor checked it standing, he probably

doesn't have MSA. His last two bone scans and thoracic MRI's have shown an

abnormality at T10, what doctors refer to as a " hot spot " . He's now going

for a cross section CT tomorrow to take a close look at it, since it

hasbeen causing him some pretty significant pain lately. And, listen to

this...here's from the report of Jeff's brain MRI....a small focal area of

signal abnormality in the deep white matter of the left frontal

region...and a partial empty cella. So, the doctor says he doesn't think

it's MSA. But in the meantime over the past 2 days, Jeff has been so

profoundly exhausted, he's come home from work and " had to sleep "

yesterday he got home at 2:00, fell asleep till 6, ate dinner and then

went back to sleep at 7:30. his hands and feet are swollen, he's

" trembling inside " and now we can even see the tremors in his hands. He

has tremendous low back pain and was walking like a 90 year old man

yesterday. SO if it's not MSA, what is it?!! HIs doctor called him in for

a creatinine panel, as his test showed elevated creatinine when he was at

Mayo last month. Now they are suspecting kidney failure? Boy is it

frustrating. I just wish that one of these doctors could spend three days

with him and see what happens. And I know how you feel, we are not

wishing for MSA either, but it would sure be nice to put a name to this!

Hang in there, Diane. I'm sure it will all be figured out sometime.

M.

Frustration

Ok group I need your help or maybe what I need is just someone to listen

to me. Dale had a complete workup of MRI-Brain MRI-Cervical spine,

EMG's Monday at Hospital in St. Louis, MO. We went to a new

neurologist who specializes in movement disorders Dr. Burns.

Dr. Burns didn't seem to think that Dale has MSA. Or his exact words

were, " you do not fit neatly into the category for MSA but over time you

may. "

My frustration is that I got a copy of the MRI report from Monday and

it says

#1 Mild diffuse cerebral and cerebellar atrophy

#2 Two small nonspecific white matter hyperintensities in the right

frontal lobe

#3 Mild degenerative disc disease from C4-C5 thru C6-C7

#4 Mild left C5C6 neuroforaminal narrowing secondary to disc bulge

Now before August of 2000, Dale never had anything wrong with him

besides a common cold.

We are not sitting here wishing for the diagnosis of MSA, but the

waiting game sometimes feels endless.

We have seen 5 neurologist -2 say it is not MSA 3 say it is. Where do

we go from here?