Tomorrow I'm leaving my house at 6 to go to a 9 am appointment. There's a new neurologist who is a musculoskeletal specialist. I'm hoping she'll give me an official diagnosis, but I'll just have to wait and see.
I just got back. Weezie, I was driving with my dad and sis. I kind of feel like I'm back to square one. I'm supposed to add a few new meds and my dad's supposed to take a video of a flare. The doc thinks CRPS doesn't quite fit, and wants to keep looking at other things. I'm sure there are multiple things going on, but I'm hoping they'll eventually do more tests and rule out more diagnoses.
I guess I just feel confused. If you're going to say it's not something, but it's similar or started out the same way, start some research and add yet another diagnosis on top of everything else. The one good thing is that the docs want more info, but I'm already being treated by the hospital and pain management for CRPS. There's one person who's in charge of pain management who's actually studied CRPS at Boston Children's and had seen the inpatient program (no meds, tons of physical therapy and behavioral therapy) do amazing things for CRPS. He also said that some parts of what I have don't sound like CRPS, but he didn't seem so stuck on how it must be something else. The fun part was explaining how a doctor misdiagnosed me with carpal tunnel.
I'm so sorry Ferretbandit. It's frustrating when it happens like that, and you're still waiting on limbo for 1) a diagnosis and 2) the right treatment. That's where I could with my tremors. (((Hugs))) & prayers! 🙏🌼
I actually had a doctor tell me that if my CRPS started in my feet that it would not have spread to my upper extremities (insinuating I was lying about the problems starting in my arms) and thus same doc told me when I had a flare to ice it!!!!!! Anyone who has this to the extent I do KNOWS one of the worst and most dangerous things you can do during a flare is to apply ice to the extremity..... YOU CAN DO SERIOUS AND PERMANENT NERVE DAMAGE!!!! That can easily lead to amputation from killing the nerve endings. SCARY THIS ADVICE CAME FROM A SO-CALLED PROFESSIONAL. We all need to be pro active and keep ourselves well informed on our conditions and treatments and what's new in research and development. WE CANNOT BLINDLY FOLLOW AND TRUST WHAT OUR DOCTORS TELL US. MOST OF US KNOW MORE ABOUT OUR CONDITIONS AND AVAILABLE TREATMENTS AND WHAT WORKS BEST FOR US THAN THE DOCTORS AND EVEN SPECIALISTS DO.