I had my long awaited neurologist/specialist appointment yesterday. I had waited weeks for yesterday as he is so booked. I've told myself all along not to get my hopes up, and to go without any expectations...
(although way down deep I was hoping for a miracle as we all are..way down deep..)
He is a friendly doc, and spent more time with me than I thought he would..close to an hour and a half..much of that was reviewing my history reading some reports and reading over some prepared notes I had..
He intimated that RSD rarely spreads although it will show some mirror effect..
When I heard that, I quietly gulped......in my mind I was thinking.."but what about everything I've read...what about all my friends on the boards"...while at the same time thinking.."could he be right?? Am I out of the woods?"
Of course, I was dumbfounded and didn't say
ANYTHING!!!!!!!!!!!!!!!!!
I made a list of treatments I wanted to pursue...this is the part that devastated me
lidocane infusions?...."well, that could help but know insurance would approve it"
bier block to the left foot?......"well, hardly anyone does them anymore and insurance probably wouldn't approve it
outpatient ketamine infusion?......well, that's like a street drug and causes hallucinations.....................
By the end of this dialog, I was feeling defeated..
I was not happy with my current pain management doc because she is not an anasthesiolist and with this appt., I thought I was giong to get some help!!
He said he does consultations only, and I can come back in six months........
In the meantime, I feel doctorless and I'm sad to admit, a little hopeless..
He wants m to go to my own doc (my own insurance through work) for a work-up of suspected neuropathy....
I wanted to scream, "
this isn't unrelated neuropathy!!! This is RSD !! Helppppp!
He advises I discontinue the monthly shots into the nerves of my foot..(they were causing a terrible flare....and in retrospect, could have made it worse..)
He suggested I replace the neurontin (terrible weight gain) with ultrum (any of you on ultram?)
...he doesn't think any more lumbar blocks would help....
I wanted to scream,
"well, what the hell is left????"
This is a W.C. case and I know they won't approve yet another different doctor consultation........
A terrible vice-like grip and burning, biting pain kept me up last night...and I face the work-day ahead....
I am so grateful that all of you are out there to understand...I'm not in a very good place right now.......
Hope4thebest
