Belinda>What else is there to do?

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:

May I offer a suggestion from my point of view. I find it much easier to

read your post when they are in upper AND lower case fonts.

Message: 23

Date: Wed, 21 Aug 2002 07:44:43 -0000

Subject: Belinda>What else is there to do?

Well Belinda... What else is there to do?

Sit there and wait to die?

Think not!

I just sent off my MRI pics (via email) to one of the foremost Chiari

experts. Figure I'll let them tell me... My internist suspects

Chiari. I have no idea. I just know that if there is something that

can explain all this - and it is something that is treatable - I'm

going to pursue it. (Of course, in my case, I have 2 girls who have

neuropathy and other symptoms - so I've got a bit of extra motivation

to find out for sure - if there is such a thing - what I've got

wrong... besides a few loose screws :-)

First, about a year ago, they thought I had Lupus.

Then, it was my gall bladder - but they my surgeon knew it was far

more than just that.

Then... it was... well... they never knew - just tried to blame it

on a couple of whimpy psycho diagnoses (which I checked out and found

to be unfounded - big surprise! :-)

Then... it was... more of the same at Mayo - but there they did

figure out I had Autonomic Neuropathy.

Now, it seems MSA fits. Only thing that really does - but... then

again, in reading the Chiari site... it does appear that the

symptoms there can be consistent with what I (or you) are

experiencing. What's really cute there is - there are literally only

a handful of docs in the world who supposedly know beans about it -

and even there - I have been talking with someone who took their

daughter to " experts across Canada and the US " . Of those, only 2

said it was ACM - and know what? It was! She had the surgery - and

is now doing much better. Just don't know - but know that if there's

a chance - I need to pursue it.

Regarding your alleged brain surgery... Who knows? Perhaps your mom

is having memory problems of her own :-) Just kidding - but... in my

case - my mom literally forgot half my childhood illnesses. She even

forgot I was diagnosed as a teenager with Fibromyalgia - I had to get

my old Medic Alert card and prove it to her.

Hey - got any brothers or sisters? Maybe one of them tried " brain

surgery " on you while you were sleeping as a child? :-)

But seriously, ever had any significant trauma back there? Maybe

that was it. Can't believe your doc didn't ask for more specifics -

especially if he/she doesn't think they'll be able to tell when they

get the MRI back.

Oh yeah... regarding the neuropsych eval. Let me know what they

do. I'm interested. I did those for a while at a local geriatric

psych hospital. If you take it all in as entertaining - it will make

it a lot more pleasant. At least with psychological tests - there is

no pass or fail :-)

Headaches are something I've been spared - really bad, intense, long

ones anyway.

I used to get them - so can relate - but they're gone - that is why I

didn't know I was still having migraines.

By the way, computer science is great! I took that at college. I

almost minored in it - and even wrote a program in graduate school

that the doctor I did my thesis with is supposedly still using!

Well, gotta git. Need to check out a few more posts - or not.

Not tired - but have a feeling this will all come back to bite me

tomorrow. Of course, the way my body is - it might not - or - if I

got a great, long night's sleep - it might bite me. In fact, I seem

to have more trouble after longer " rests " than shorter ones.

Oh well - one thing about MSA/SDS or even Chiari - it's all

consistently inconsistent and difficult to predict.

Adios for now

Pablito

Sennewald Charlottesville, Virginia