how pain and subjective symptoms are explained in DSM IV. Advice accompanied by venting

[Guest guest]

Dear Joyce,

I believe most of us can relate to this letter!

At one point you stated -

" What bothers me the most is when people have other doctors, some of whom have

put YEARS of effort into helping you are assumed to be wrong and the fool who

sees you 15 minutes, doesn't look at your chart, makes assumptions, and doesn't

get it thinks he is the one shining light and all these other doctors must be

wrong. Yeah, right... It isn't just the patient being discounted, to me it is

every other professional involved in your care. "

AMEN! I actually had a head Geneticist who had moved from Pittsburgh to U

of PA. discount 3 prior Geneticists, 2 of which had worked in the same position

before him - in a letter mind you not to my face. This after doing a half

hearted exam, (only bending a few fingers backward nothing forward, bending my

elbows back while holding them not even looking at them etc. basically only

parts of the hypermobility test) not reading my chart (which I could tell from

his talk during the app) and spending tops 15 minutes with me! I didn't even

know I was getting re-examined till I got the letter 2 wks later, thought it was

my usual update session I'd had every year with their office after I was dx'd.

He stated in the letter that I have a connective tissue disorder unknown at this

time. How he could even say that with the other things he said in the letter -

like mild hypermobility!! (this after the head Geneticist who had worked there

for years prior said I was the worse case they had at the clinic as far as

number of joints involved) is beyond me.

I in turn wrote a letter back which made him revise his initial letter

somewhat but not enough. Come to find from speaking to the counselor that this

guy believes that EDS people should have either atrophic (sp?) scarring or

soft/stretchy skin and if you don't have one of those you aren't EDS no matter

what skin or other issues you have. When I asked the counselor to explain then

the difference between Classical and Hypermobile EDS using his criteria she

couldn't. Apparently he is looking more at the research end of things and wants

people only showing the strong skin issues, which he feels have more of a chance

at finding a marker. I am not going back to him and will see the first

Geneticist who dx'd me from now on.

But the damage is done! Six years of work, with the head Geneticists who

was there till 2000 and the one there till 2002, all the reports, tests and

files that sit underneath this morons letter are all damaged! All the hours of

history work done, physical exams testing, all of it gets blown away by a 15

minute rush visit! Now it is up to me to try and put the pieces back together.

Whew! sorry :-) there's my little vent!

Basically - these docs can show up anywhere and everywhere. From top

positions in top hospitals to the most rural back road.

You also stated - " my shoulder which falls out every time I move but when

put in a neutral position for xrays, looks normal "

I firmly believe that if I got in one of those standing MRI's where gravity

is in play on my joints the test results would be a lot different! For instance

you can visiably see and feel my shoulder & blade slip in and out yet the MRI's

lying down put it back in position and all they find is a labrum torn to shreds

but no bone damage associated with recurrent dislocations. How the heck can you

destroy the labrum to the point it is almost totally gone yet not had a

dislocation? They hold us up next to the " norm " which can be a bad thing

sometimes. " Normal " people would have a violent episode with a dislocation

affecting bone, we are SO loose that ours does less or none of the immediate

tramautic damage normally seen.

Anyway, I just had to put my Hallelujah! to your letter. Also to warn that

this type of doc can show up when and where you least expect it. I wish you the

best of luck with your complaint and hope it gets in the hands of someone who

can and is willing to do something about it.

Hugs,

B.

HEDS, New Jersey, USA