Questions for those with Internal or Full Body RSD/CRPS
 

Hey all,

I'm sure this question has been asked a lot but I would like to know HOW did your doctors confirm that RSD affected your internal organs or that you had full body RSD. I just want to be informed because I've gotten a referral to see another PM Doctor and I just went in yesterday to see my old PCM who knows everything about me and my illness so he's decided that I should be getting a second opinion regarding my treatments from another PM Doc. I want to be able to go in there and ask her to run certain tests to either confirm or deny that some of the new symptoms I'm having is related to my RSD or not. But idk what I should be asking her to do. I'm sure she is knowledgeable, but so was my current PM and he basically shut me down and said none of my issues are related to RSD. So if any of you could please chime in and let me know what I should be asking her to do such as an MRI, or I don't even know what kinds of other tests but I'm sure y'all would know.....that would be appreciated!!!!!


Thanks again,
Jenn

Oh man...I know this is not what you want to hear so I hope someone else can chime in with a better answer. But...I was basically told that if there was no OTHER cause for the pain and symptoms then it was RSD. That meant LOTS of appointments with different specialists to rule out a bunch of things that COULD cause my pain and symptoms before I got the RSD diagnosis for those areas. It took months but it was worth it because if it had been something else it would have been important to get the right treatment. Hope there is an easier answer...but I don't know of one.

Hi Jenn,
By what I get from your question is a need of a second opinion on treatment.
If I'm wrong forgive me.
My diagnose was after tests performed by a neurologist. Cat Scans, EKGs, MRIs ect.
As far as I know there's more doctors unfamiliar with CRPS than familiar.
Getting to a correct one is so important.
A PM doctor to the best of my knowledge is on the treatment side of things rather than the diagnoses.
As far as being diagnosed as full body, my diagnose was through my neurologist visits. She could see the progression and the further disability over time. I don't even have a PM my neurologist takes care of that.
I hope you get to the bottom of this...
Take care...

For Me.....
As was mentioned, if ALL else is ruled out thru tests etc then it is RSD, a SUDDEN issue could also be the reason why it is. I was sitting here one day after being an active long distance walker, I also walked a LOT at work. Never smoked or drank in excess, my diet was considered well balanced, cholesterol was excellent ALL that has been taken into consideration. My heart started being odd, I was feeling ILL so went to chemist to get a BP test, they found my pulse rate was irregular and was racing...I was taken to hospital immediately. I worse a cardio thingy in a harness and it showed 2 forms of issues. So i went and had a stress test with cardiologist. It was just said it WAS, my gall bladder had no issues before no stones etc. I collapsed at home a fancy test showed it was only working at 77% reduction in a week it had basically stopped and I had liver and kidney issues starting so out it came. I have had that many tests and scans and MRI's I guess that is why they came up with this.....but i CAN tell u something, it is frustrating because anything new happens and i dont know if another RSD or if an actual problem...do I stay at home or urgently go to the hospital. I am happy to talk with you in depth if u wish about specific regions you might be having issues with and let you know what it is I would be asking. Hope this helps...PS,, like RSD in brain or body, there is NO use stressing about it, the docs will get to the bottom of it and they will sort it out. Afterall, that is WHY we pay THEM