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

[Guest guest]

Hi All

Doctors can sure be frustrating......I went to emerg some months ago with

panic attack (we were in the middle of genetic testing) I did explain to the

doc what they were looking for and that my son had recently passed away from

a ruptured aorta. This is what he did...pulled the skin on my hand and said

you don't have Ehlers-DAnlos (although he didn't get the name right, also my

own GP had me talk to a pschyologist or pschyatrist (not sure which) to get

a handle on my panic/anxiety attacks ....to put it bluntly she was a b@@##.

SHe coudn;t even get the name of the syndrome right...kept calling it Erlos

Danlos which was really starting to annoy me. However on a positive note my

family docoter is great and wants to learn all about EDS (Type IV) is what I

have they are almost sure as they are still doing further tests. My genetics

docotor here in Calgary referred me to a rheumatolgist who is very

knowledgeable about EDS and has done alot of work with other drs and worked

with a Dr. Pope I believe in England. I had my visit with him and he was

very helpful. I have been fairly lucky in the sense of finding good

doctors.....now if we could only educate all of them!!!

As a footnote ......to those who are considering leaving the list, please

rethink. I don't know you but I must say it has been extremely helpful for

me and my family to hear what other people are going through. Everybody is

important!!

Betty

how pain and subjective symptoms are explained in DSM IV.

Advice accompanied by venting

> 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

>

> 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

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