A cautionary tale

[Guest guest]

Hi folks,

I must relate something that has been happening with me for the last several

months

because it is a cautionary tale in the difficulty of separating Chiari symptoms

from non-Chiari

symptoms. I have Chiari, POTS, and the connective tissue disorder common with

Chiari.

Because of the POTS, I am exercise intolerant, short of breath, and prone to

feeling like I'm

gonig to pass out (my blood pressure drops a lot when I'm upright). But several

months ago I

started (gradually) to feel much more breathless and lightheaded. I talked to

Dr. Frim about

it and he thought it was something different from the Chiari and that I needed

to have it

checked out. So I was sent here (Madison) for a bunch of tests in cardiology

and

pulmonology. They didn't find anything major enough to be causing this, so they

attributed

it back to the Chiari. Then I had an overnight sleep study (because I never

feel like I've really

slept) and was diagnosed with Periodic Limb Movement Disorder. During the test

I woke up

164 times (!) and had 355 leg jerks. One thing that can cause this is severe

anemia. And

sure enough, when checked, I turned out to be severely anemic (I also had a

C-reactive

protein of 18, which is grossly abnormal). So now we are looking for the cause

of the anemia

and running tests. If I hadn't had the sleep study this might have gone on for

a while. We

attributed this all to POTS from the Chiari. So, the moral of the story is that

we still need to

get checked out for more common problems, even if it's possible that Chiari and

its fellow

" travelers " can be the cause.

Jeanne in Madison (Chiari 1, 2 decompressions and stent, POTS, connective tissue

disorder)