Quote:
Originally Posted by hope4thebest
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  |
Hi Hope4thebest,
I'm so sorry you went thru that disappointing experience. How frustrating.
Please don't give up-there are knowledgable, caring Drs. out there that will be an answer to your prayers.
For me, it was 4 years before I got diagnosed. I got RSD following surgery.
It's strange, but I got my last Dr. of 5 years out of yellow pages. He is wonderful-a 3 in 1 Dr. Neurologist, Pharmacologist, & Psychiatrist.
I attended the RSDSA annual meeting here in AZ this spring. Jim Broach is a helpful kind person. Let them help you. On the website there is a space to put your zip code in. Then will come up name of support group leader and phone number. The group have experience in the area for good RSD Drs. RSDSA.com '
Also calling pain management centers, you can ask if they have a RSD specialist.
I was diagnosed with rheumatoid arthritis even tho the tests were negative. I decided to fly to a sports injury orthopedic group I knew were well known in a college athletic town. I few 2-3 states away and saw the hand orthopedic specialist. He looked at my hand and said RSD within 1 minute. He gave me 20 page info in RSD. Very compassionate. Set me up with therapy next day. Ordered a Tens Unit same day. And same day sent me]to nuclear med test, which was positive for RSD.
I can't tell how how many Drs. I tried, but lots. It's very discouraging, but good Drs. are out there.
I've had the flu,chest infection for 2 months. Went to gp Dr. down the road, got 10 days antibiocs, but a few days later came back. So I called for appointment and mentioned to the Dr. when I got over this, I wanted a flu shot. He says ' you don't need to wait, you can have it now!!!!!!!! Can you believe that. I don't think it is a healthy thing to get flu shot while having fever, and infection in your chest, lungs. I was dumbfounded- felt I don't want to even go back to him. I think I will see my internest and get x-ray.
You will find a good Dr. Please don't give up. The local support groups do know who is good in town. Or chronic Pain Drs.
If you know any nurses in town, they hear things about Drs. Attorneys also know who top docs are. The truth is not all Drs. even have a clue about RSD. A website I learned a lot on is rsdrx.com Dr. Hooshmand is retired, but
I got a good education from it. Sometimes, we get overwhelmed from reading too much and need to take a break. We can get overwhelmed about the magnatude of this 'thing' in our life. It is a life changing event, and wc is fighting something we are not used to. Counseling can be a life saver.
Please take care, and keep in touch, your friend, loretta soft hugs