Re: CFS & Tilt Test

[Guest guest]

On Nov 4, 2010, at 9:10 AM,

wrote:

> my prob is i could not stand up to do that

> otherwise they could simply do it with me standing in his office

> i was attached to the table with straps

> but i have a movement disorder

> and then that started up and i lost ability to speak

> not good at all

> it was a horrible test

> my BP did not change from lying to standing

Hi ,

Yes, of course your movement disorder plus their non-protocol way of doing test

caused your BP and HR to look unchanged.

You say, not good at all. But, your symptom of not being able to speak is a

significant symptom.

Write down all you remember that made the tilt test " not good at all. "

Not good at all seems to refer, in a way, to your inability to be a good

patient.

Being a good patient is not at all what is called for when trying to diagnose

complex syndromes. A movement disorder is also a significant symptom of ...

something.

The reason you were strapped to the table, normal for tilt tests, was to keep

you on the table lying and then more upright and to notice BP and HR changes.

But straps do not prevent movement.

I was horizontal which is also non-protocol for CFS because standing takes

muscle which improves circulation which may have messed with my results too.

I'll never know since no way will I take another tilt or standing test except to

test recovery from OI.

Your symptoms and involuntary movements during the test are also important to

make notes for your records including records of the doc performing the tilt

test itself. At least include your own notes with your own files, maybe with

notes of witnesses, writing without your input, who were with before, during

and/or after the tilt test.

It may be too long ago to add notes now, but give it a whirl.

Take pen to paper and write down everything that happened to you on that tilt

table.

Then find anything you wrote at the time adding, making these notes available to

all relevant medical and disability personnel.

And get the tilt results and doctor's summary and carefully read it then ask

someone knowledgeable of OI/CFS to review your test.

toni

cf-alliance.tripod.com/

from iPod touch

[Guest guest]

I already done that!

I mean I already have written notes of everything that happened and wrote why it

was not good!!!

I shouldn't have started a new line

it should have read " and then that started up and I lost ability to speak not

good at all "

Ie the not speaking was " not good at all "

Has nothing to do with me NOT being a GOOD patient I far bloody from it i can

tell you (sorry to sound like this) but i am sick of the **** that the drs have

put me through!!!! The trouble is cardiologist belives movements are ON PURPOSE

which they are not. I can tell you i have had dystonia for over two years and

although they aren't to the bottom of it they are starting to get there

I have given up on this guy and I doubt there would be anyone who could make me

do another tilt table test UNLESS they followed PROPER procedures the mere fact

that he left me standing upright for 10 mins is beyond me I was in so much pain

seriously could not speak.

Ihave a psychologist who is writing to such professionals as this one who

believe i have conversion psychosomatic or facticious disorder because she does

not believe that I have ANY of these disorders firstly due to not having had

physical symptoms ruled out and secondly because i do not have alll the symptoms

of said disorders. Its been horrendous so if i sound annoyed frustrated its not

at you trust me its just been really hard to deal with.....