Belinda>What else is there to do?

[Guest guest]

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

> > > > Hi. Can't even remember where the original post came from -

> > after

> > > > all the dickering between Vera and Bill :-)

> > > >

> > > > But... anyway... I searched around, and did come up with

one

> > > doc.

> > > > This one came from the Arnold Chiari Malformation physician

> > > referral

> > > > site. I realize the disorders are not the same, or

necessarily

> > > > related, but perhaps it will at least be a good place to

> start.

> > At

> > > > this point - it's at least " A " place to start :-)

> > > >

> > > > I tried to email the person who actually made the

> recommendation

> > on

> > > > the ACM site regarding this physician, but the email was

> returned

> > > to

> > > > me undelivered. So, take it for what it's worth - and ACM

> makes

> > no

> > > > group claims regarding the skills of docs on their website -

> but -

> >

> > > as

> > > > I said - at least it is SOMEPLACE to start. And if you don't

> > want

> > > to

> > > > travel far - at least at first...

> > > >

> > > > Dr. G. Ellenbogen

> > > > Neurological Surgery

> > > > Children's Hospital and Regional Medical Center

> > > > 4800 Snad Point Way N.E.

> > > > P.O. Box 5371

> > > > Seattle 98105-0371

> > > > (ph)

> > > >

> > > >

> > > > By the way Vera, can't help but get in another " jab " here...

> > What

> > > > kind of a doc works at a place called " Knife " something or

> > other?!

> > > > Had to laugh when I saw that! (That was where one of the

docs

> > you

> > > > found officed from - wasn't it? Or is my memory just proving

> > it's

> > > > fallibility? :-)

> > > >

> > > > While I'm at it, here is one from Oregon who actually had 2

> > people

> > > > willing to recommend him/her (Kim is a pretty generic name

from

> > > what

> > > > I've found).

> > > >

> > > > Dr. Kim J. Burchiel

> > > > OHSU

> > > > Department of Neurosurgery

> > > > Portland, Oregon

> > > >

> > > > There was one more from the Portland area:

> > > >

> > > > Dr. ny Delashaw

> > > > Neurosurgeon

> > > > OHSU

> > > > 3181 SW Sam Park Road, L472

> > > > Portland, Oregon 97201-3098

> > > >

> > > >

> > > > No names of people who recommended him (guess ny could be

a

> > > girl

> > > > too - ? Life is so confusing nowadays :-) but at least there

> is

> > a

> > > > phone number, and appears last one offices from similar

> location

> > as

> > > > former.

> > > >

> > > > Perhaps you're closer to another state. I can't remember

where

> > you

> > > > said you were from - what part of WA... But, if you go to

the

> > ACM

> > > > site, you can find other docs, and find these as well - and

> even

> > > > click on the people who recommended them (and see if you can

> find

> > > any

> > > > of them with email addresses that are still valid - most/all

of

> > > them

> > > > I've written have been returned).

> > > >

> > > > ACM website - physician referral pages part:

> > > > http://www.pressenter.com/~wacma/usdocs2.htm#Wisconsin

> > > >

> > > > Don't be deceived by the " Wisconsin " in the name... it is

> > actually

> > > a

> > > > list of all states. There is another if Canada is actually

> > closer

> > > to

> > > > you: http://www.pressenter.com/~wacma/country.htm

> > > >

> > > >

> > > >

> > > > And, lest anyone think I'm just surfing ACM due to Tenacity's

> > > > experiences of late - nope - I've been on the ACM path a

> while.

> > In

> > > > fact, trying to pin down which doc(s) to send my MRI pics

to.

> > (And

> > > > I've delayed that process due to info received from ,

to

> > > assess

> > > > all information I can get.)

> > > >

> > > > Had theories validated recently, when someone from Canada

> looked

> > at

> > > > my pics and said indeed I do appear to have Chiari. Now,

> whether

> > > > that will help with anything - that remains to be seen. And,

I

> > > know

> > > > of people who had ACM - but also had MSA - and still had the

> MSA

> > > > after ACM surgery.

> > > >

> > > > Is this what is meant by Alphabet soup? :-)

> > > >

> > > > I'm used to it, my name is professionally followed by: M.S.,

> > > > B.C.B.A., L.B.P. and when my wife took over as my secretary,

I

> > had

> > > > to write out a page of over 40 abbreviations we use daily -

but

> > no

> > > > one outside my profession would know them. :-)

> > > >

> > > > Pablito