Quote:
Originally Posted by PurpleFoot721
I have taken a little time away from this forum lately, but decided to do a little catching up yesterday after returning from my PM visit. It's nice to say hi to everyone, and I wanted to make sure to wish you all a Merry Christmas.
Yesterday I saw my PM, I actually saw him this time and not his PA. We are at a point that we are running out of options. He has me on the highest dose of Gabapentin he feels comfortable putting me on, just increased my Amitriptyline to 100mg, left my Fentanyl at 50mcg/hour for now but may increase that in the next couple of months, and just increased my Percocet to 10-325 for breakput pain. I am getting no relief from any of it. He is talking about increasing my Fentanyl one more time and prescribing morphine in place of the Percocet if I still find no relief. Past that, the only suggestion he has is SCS. He knows that I do not want to do that so he is out of ideas other than he jokingly asked if I like whiskey.
Yesterday I asked if he has tried LDN with anyone. He has never heard of that being used before for CRPS, but isn't too thrilled about it for the sole purpose of having me going through detox from all of the opiates.
He spent quite a while talking with me. Of all of his previous experiences with CRPS patients, he has never seen a case as bad as mine outside of the short amount of studies he did at the Cleveland Clinic.
Now, I know he has experience with patients with CRPS but what makes me really nervous about him now is, when I saw him yesterday, he told me I am a stage III CRPS patient that is spreading so aggressively, he wouldn't be surprised if it develops into stage IV. As soon as he started talking about stages, I immediately asked myself Why is he talking about stages if he knows so much about CRPS? I didn't think that knowledgeable doctors still talk about stages. Even those that do, Stage IV? I really doubt it!
Is it time for me to find a new doctor? He seemed fairly knowledgeable when I first met him a few months ago, but if he is talking about stages and pushing an SCS, maybe it's time to start the search again. he told me himself he is running out of ideas and is depending on my research. I'm glad he is open to a patients research, but I just am not sure what to do at this point.
I hope everyone has a wonderful Christmas.
|
I don't know what it is like in your part of the country. But around here, there are very few doctors that are knowledgeable about CRPS, and even fewer that are willing to treat the disease. In fact, I had to do some looking for a doctor recently and I found a total of 2 of them within the entire North Side of the Metro area, where I live. If your doctor even knows anything about CRPS and has ideas on how to treat it, you may want to make sure that the one that you may get to replace this one knows at least as much. That way, you won't be going backwards instead of forward.
ERRRRRR I HATE Pain.. Silly Flare up! So frustrating sometimes.. isn't it? ERRRRRR... Ouch! This hurts so flipping badly! MY GOODNESS