Dear Pete,
You are lucky you live in PA where your "neurologist" is actually educated in the field of RSD. It is literally IMPOSSIBLE to find a neurologist that knows ANYTHING about the subject in my area. I have been to at least half a dozen doctors in RI. The last neurologist I saw wrote that he thought my pain was due to depression and my ears were messed up (I have an intolerance to noise) because of the Fentanyl I was on. The guy was an RSDer's worse nightmare come true...
As to the 2 docs that finally TREATED me (not just threw drugs at me, though I do use those also), the first trained with Dr. Daniel Carr at St. Elizabeth's in Boston and was a board cert PM and Anesth, and the 2nd trained with Dr. S in Philly and was an Ostepath in South Jersey. I loved them both. If it wasn't for them I wouldn't be where I am today, because they both cared about people with RSD.
Just my 2 cents - I think its important for everyone to not give up on trying to get the blocks, lidocaine infusions and ketamine if they can, and to work at the OT and PT. It took me MONTHS of fighting with insurance companies and sitting on waiting lists, but in the end I got what I wanted. It just takes a lot of determination!! And patience....
As for the ER, when I get really sick I just can't move, except to get between the bathroom and my bed. I would never be able to get there...my migraines are too intense. You'd have to knock me out first.
XOXOX Sandy
Quote:
Originally Posted by AintSoBad
As has been said. This situation needs to be dealt with before it happens, and it needs to be planned for.
Here's how my Doc works it.
I have a 'serious issue', I call him. He sends me to the ER, and, when I arrive, they're ready for me. If they need to converse with my doctor, (a Wonderful neurologist), They can and will, immediately! (I simply cannot, will not trust PM doctors!)
They can get him on the phone immediately, but, they usually know the deal, because he's already told them!
What a cool set up, huh?
But,
It's been almost a decade since I've needed to go to an ER, since my Doc has done one better!
He asks, that I 'save' some meds on 'good days', and that, I surely do!
So, that makes ME be responsible, For Break Through pain.
What a difference that makes, Too!
Hope all are well!
Love,
Pete
asb
|