Praise God, I heard back from my pain dr. today! :) You haven't read a new update in a while because I've been waiting, waiting, and waiting myself to see what's next. ;) Okay, soo, my pain dr. sent a referral letter yesterday to a neurologist outside of the OHSU system, and hopefully, I can see her real soon! She only takes special cases now, and according to my pain doctor, I'm a special case. ;)
I've been wondering if I have something called Syringomyelia (it's associated with EDS) because you can get a drooping eyelid, headaches, and leg weakness with that. My pain dr. did say today that SM is possible, but I'd have to get an MRI. He doesn't want to take out my SCS, tho,' until a neurologist says so. He does think that "there is a real possibility of an MRI finding pathology that changes treatment." I'm glad he thinks so! haha :) You're probably thinking, Why are you glad that he thinks an MRI would show a disease process? Well, because the previous neurologists I saw weren't helpful at all and implied that these symptoms I'm experiencing are in my head!! I had a terrible experience with them. The attending neurologist that I saw last month in the hospital even had a resident psychiatrist with her. x[
So I'm soo grateful that my pain dr. understands and even told me he won't leave me "out in the wilderness." :)
Physical therapy has been tough. My left leg still isn't strong, and whenever I do a certain exercise, my right leg goes out of my hip socket or something like that (EDS problems once again..). My therapist told me to stop that exercise, and we'll discuss this dilemma tomorrow when I see him.
Praying for you!
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