How would you handle this?

January 6, 2004

Hello ceda ppl

I was wondering if you all had any ideas of how I can deal with a particular

situation? I know this has been brought up many times; but wondering how

people find ***resolution*** for it.

For those who don't know me; I have HEDS as do both my daughters.

It has been a rough trip getting medical care; and I have done everything

possible to find it. After years of frustration within a large teaching

hospital/clinic; I finally got into the chronic pain group. I thought this

would answer the question of going to doctors for one thing or another only

to be sent to another doctor for a different related item and nothing was

ever attended to. My main goal was to have someone oversee my care in order

to find a conclusion of some sorts to the assorted medical issues; my trying

to do this was a useless battle.

They were very thorough at the beginning; promised to stay with me

throughout all the issues of which I had not been treated for. They asked

me to pick the top three pain issues; and after those were treated they

would move on to the others. I chose the leg/hip issue; the tmj issue; and

the thumbs. They sent me to different people to review my issue with each;

and the plan was to get together with all the docs to create a master plan.

Sounds good so far. Exactly what I was asking for.

Then I get 'the' call. The one to see the shrink for the mmpi.

I have a severe form of ptsd and researched the professionals (before this

EDS dx) and found my present therapist - who is a specialist. I packed up,

left my employment and moved here in order to work with this person; as she

is one of the best in the United States; and one of the few that will take

on someone with severe ptsd. It was an exhaustive process in itself. It

was one of the smartest things I have ever done and I have absolutely no

complaints with this person.

I had taken in a letter from this therapist to the chronic pain group which

stated that I received no secondary gain from my claims of chronic pain;

that in her opinion all my pain is as severe as I say it is; and advised

against my being given the mmpi.

Now the chronic pain people have stopped my medical care unless I take the

mmpi. I have signed a release for them to speak to her about the reasoning

for her requesting this be omitted. They insist that they need it; rather

then going by the diagnosis that my therapist has given me and what I have

been treated for successfully for the past six years. They will call her up

and speak down to her; basically telling her that 'she wouldn't understand

what they do there' and advising her to take off six hours of her practice

to come there and 'observe' them. It is highly insulting and I am frankly

embarrassed by it all. She has as much - if not more - education and

experience as the testing person that they are wanting to send me to.

So I was wondering what types of methods work for others in this type of

situation. They insist that no pschologist has ever requested that the mmpi

not be given. I have thought about a letter to the hospital/clinic; though

I think this person is the head of that department -- and not sure who

higher up I can send it to. I thought about going to another one of the

docs and asking them to tell me how to address it (though I seriously doubt

this would work - as there seems to be political alliances of some kind in

this place) I have tried to contact the genetics department and have them

help; but it is the same outcome.