Re: Dateline show depressed me

[Guest guest]

<< We have wanted media coverage for our cause but now I see it as a double

edged sword.

Cherry >>

cherry

a agree ....it is a double edged sword .......try to hold faith , that the

number of doctors grasping the understanding of acm is growing ( we know this

is happening (G) .....while the issue of fibro is related certianly ......its

not the same thing , in a chiari situation.

.....as one of those 'foot in each camp ' doctors said not long ago

.......when you find a chiari in a " fibro " patient ....you found the cause of

the 'fibro' symtoms .

ive come to think of fibro , like the term bells plasy ....useful , when you

dont know exactly why , but do believe its real . tehehe ....bells palsy ,

acording to one neuro i saw not long ago , is a catch all term for the

symptoms , not a diagnosis .

thank goodness , with the slant they took ...they didnt focus on acm .....(

big blessings in small packages ) .....look at it this way ....they didnt

help fibro ( i think fibro , will turn out to be a number of differnt

disorders , leading to the same end , nerve and chemical changes ....)

but they didnt harm us either !

so ....time will help untangle fibro .....the first studies have been

encouraging i think .....if 25% of folks experiencing fibro , turn out to

have stenosis and or acm ....then 25 % have a shot a true improvment

...answers at last ! ......

its like this ms battle i wage ........there isnt a cure ....there is modest

improvement in progresion of symptoms , if you take meds with truely

challenging side effects ....theres not much understanding of it yet either

.......both " rare disorders " ........so i continue with nonwestern practices

, knowing im in the top 10 % of those studied with ms , in function and lack

of permanant dammage , depite being 47 :-) !

so i muddle along .....trying to stay centered ....on ballance ......and

greatful for each moment of my existance .......blessed to be here , with

what ever hand im delt .

sarah in paradise

[Guest guest]

Cherry

I am so sorry so many terrible things have happened to you

especially when you are feeli so poorly

while i was dissappointed in last night's show

it did not say what you heard

the question the doctos raised their hands to was not a

"vote" on whether they believed fibromyalgia

was a real disease or not

they voted on whether the diagnosis was helpful

the doctor then who asked the question then went

on to say there is real pain and real symtpoms being experienced by people

who have the diagnosis FM

well anyhow

the show could have been a lot better

but it wasn't as bad as it could have been

hope thihelps someone

melinda

Cherry wrote:

As

I watched the show on dateline last night I was overcome with depression.

I have been receiving treatment for fibromyalgia for almost 10 years now. I

feel that the show was devistating to our misson of educating the medical

community about fms/cfs/chiari link. The

worst part for me was to see the conference where the doctors held up their

hand to "vote" on whether they believed fibromyalgia was a real disease

or not. They mentioned that some of the doctors were neurologists. When

I saw that I just started to cry because it reminded me of the jerk of

a neuro that I saw locally who blew off my diagnosis of chiari even after

reading a letter from Dr. Milhorat. I can't

see where any good at all will come from such a slanted view of fibromyalgia.

How I wish that the young doctor, who is so adamant about fibro being psychological,

could live just one week in my body. I don't think he would make

it past the first couple of days without calling Dr. Kevorikan. I

don't know how to express the depression that overcame me after watching

this show. We have wanted media coverage

for our cause but now I see it as a double edged sword. Cherry

[Guest guest]

Cherry said:

" The worst part for me was to see the conference where the doctors held

up their hand to " vote " on whether they believed fibromyalgia was a

real disease or not. They mentioned that some of the doctors were

neurologists.

When I saw that I just started to cry because it reminded me of the

jerk of a neuro that I saw locally who blew off my diagnosis of chiari

even after reading a letter from Dr. Milhorat. "

===================================================

Don't worry about this too much Cherry.

I don't think many of the docs, really would like to have the public

know,

that this " show of hands conference " thing actually took place, over

what

world known NSGs already know about.

It looked like , just what it was. Them guessing and deciding how

difficult

their work would be for the immediate future.

Had they voted the other way (publicly also), then they would have an

immediate flood of people to see and treat nation wide, if not world

wide.

I predict they will fight this, just as some are still fighting the

chairi facts, for as long as they can possibly do so. They have to try

to hold off this waiting " stampede of patients " as long as possible

some way.

And " knowledgable patients " ? Chain the doors!

This is of course the particular docs who would rather fight than

learn, or

are at the wrong school of thought to begin with.

Believe this. That part of the show could not have only looked

ridiculous

to just me. Others were watching , them " skewer themselves " , just as

we were.

Terry