update from

[Guest guest]

Hi

finally i have some GOOD news

the first is that i have a very supportive psychologist who thinks that the RAH

has jumped the guns and given me 3 completely different diagnoses at once!!!

Cause they dont KNOW whats wrong and cant be bothered finding out they are

psychosomatic conversion disorder and facticious disorder and according to her

definitions you cannot possibly have ALL 3 its one of them or none of them and

they ALL state clearly that you have to rule out ALL the physical possibilities

FIRST before that diagnoses is made. Considering how difficult mito is to prove

and dystonia for that matter it is no wonder that they just want to take the

easy road and send me to a psych!!! But SHE is not having a bar of this

apparently workcover dont like her shes not on committees etc She also told me

that they ALL have a duty of care to ME and that they have failed ie sending me

home from the RAH NO support NOTHING same deal from dr kimbers apmt no follow

up. My cardiologist keeps ringing her but i refuse to give sharon my permission

to talk to her why should I???? He can think what he likes from that folder

(which i now possess myself through FOI) but honestly he saw me twice and if he

really took a good look at what happened at the tilt table he might have worked

out that i actually DO have a problem which has now been proven through the MIPS

and MEPS testing apparently i have restrictive lung disease so no wonder i felt

like i wanted to pass out!!! Being on that angle felt like there was a ton of

brick and i was having difficulty breathing but cos they were so focussed on the

damn movements they didn't realise i lost my ability completely to TALK it was

really awful!!! So perhaps that goes a LONG way (and objectively at that) to

explain SOME of my symptoms!!!!

I also have to tell you that the UMDF have sent me 3 mito 101 cds for patients

and physicians WOW is all i can say it has really really good info on it and i

am going to give one to my neurologist!!!! I have put off seeing her til

december because the med at current dose is not helpingthe movements so i am

slowly building up the dose also not doing harm so while its like that im happy!

Also the genetics apmt was cancelled postponed til the 12th of november so at

least we dont have to wait too long! I am hoping that they will be helpful

I have a quote from a dr who is a friend of my friend i thought you would find

this funny i sure did

It always amazes me in cases like this that they DON'T go for the tissue, get to

the bottom of it, when there is any doubt!

If we medicos are so EBM focused, get the damned evidence!!!

Thats all for now hope you are all well