Rheumy yesterday - what a waste of time.

[kimbo]

Yeah Scottie ,  I think the letters would serve as good therapy for you, also, to get it off your chest.

Hey Patze, I was determined to loosen up that ole Srg Friday of a Rheumy I talked and ask exactly what I wanted to on my visit and he had to loosen up.

Scottie , what would it take for you to change Docs ?  Is it possible ?

kimbo

[kindandcaring]

Scottie

I think Doc's just dont want to know really..unless its life threatening..I reckon they see all these whining patients as the norm.

btw Ive got Tinnitus almost the moment I started on plaq..boy oh boy we need something better than we have now.

Id love to be able to see someone every six months and just unload every symptom and issue..unfortunately Ive found that the docs are not the ones likely interested...as long as you walk in to the office I reckon they think you are not that bad...and anyhow what can they do for us..not much...then they also rationalise that other Doc's will take care of the other symptoms..yet a lot of the time none of the Doc's put their hand up to investigate...we are kinda complicated for them.

Thats my minivent lol...sorry Doc's I know we are high maintenance however..some kind of protocol for systemic AI sufferers should be in place to provide much needed comprehensive care...which by all these accounts from us is currently badly lacking.

[Chickpea]

Kindandcaring is SO right - we definitely need a system of 'comprehensive care' as she puts it.  A system that kicks in as soon as someone turns up at the doctor's with AI symptoms, so that a broad range of blood tests can be done as a first step.  Even that basic first step doesn't happen for so many of us.

There is a protocol here in the UK that offers this to possible RA cases, and GPs are encouraged to send people with RA symptoms to rheumies asap, after relevant blood tests.  How hard would it be to extend this to others?  We also have rheumatology nurses who offer follow-up care to rheumy patients, including phone counselling.  But if you're outside the 'norm' of RA you can be lost.

I suppose we just have to keep dreaming!

Chickpea

[Scottietottie]

Hi - The phone counselling goes for people with any kind of heart problem too. Hubby developed angina but a battery of tests can't ascertain why and he hasn't had an episode since being on statins and beta blockers. Any questions though - he has a number he can phone any time.

[hoping]

..some kind of protocol for systemic AI sufferers should be in place to provide much needed comprehensive care...which by all these accounts from us is currently badly lacking.

Amen to that.  Even without the bloodwork, it wouldn't kill a doctor to do a comprehensive thorough investigation of our complaints.  My neuro was like too bothered as was his nurse practioner to do an exam last time.  Just review the meds and bounce me back to the rheumy for major care.  Wanted to insist that he check a few things, but no way no how, don't call the shots on them.  And as far as writing, keep it to the utmost professional, sprinkled with praise throughout, or may bruise their inflated ego and not be well received.  I have tried taking in a typed copy of my recent complaints since last visit and was only given a look like great, thanks, do we have to review all of this.  Now I do take in my written list on a small note card and try to hit the major things on it.

Scottie, I sympathize for you.  Have been in your situation many times.  Most times, I give up and move on to another doc., other times I just try to bear it.  There usually aren't any greater prospects around the corner. 

Karin

[Patze]

Hi Kimbo,

Yep, I have tried to loosen him up too, still hasn't worked.  Dang, and I thought I was crabby these days!


Patze

[kindandcaring]

Hey for those that dont know  Im a he not a she

Im so glad we all understand how it is....it helps a little..thanks to this forum..otherwise we would be completely on our own thinking these thoughts..going crazy no doubt.

This place helps...especially when all these Doc's think we are all crazy and acting irrationally lol . !
All we really want and need is to be decently cared for...yet it is with sheer frustration that we try writing letters or plead or get pushy..or stamp our feet...

walk in our shoes for a short while and see how the world looks.

I think us talking here highlights it so well..lets face it drug addicts get more counselling and help in many ways than we get...now I believe everyone should get care..um hello what about us though.

For cryin out load if you are suddenly told you have one or multiple Autoimmune Diseases..perhaps progressive, chronic..then you would think that the system could recognise your plight and adjust resources to you accordingly..instead you go home and wonder and worry and hurt...and on and on..

If Counsellors were avaiilable trained in AI's and more coop/coord care ...perhaps if there were more Autoimmune centers..we would feel the care we all surely deserve.

For example my local hospital does not have a specialist Autoimmune clinic..rather it is immunology for all types of many immunological diseases like Aids etc.

We dont seem to get much focus yet.

I hope someone s listening lol..perhaps one day it will change and we will get phone support / counselling and coordinated coop care across all the medical disciplines that we so need.

Its not as if there is only a couple of us..in fact we are among millions and millions