Great appointment today with the new physical medicine and rehabilitation doctor. He was kind, compassionate, knowledgeable on the majority of my conditions, and genuinely wants to help. As far as treatment for my CRPS goes, he said that if the ketamine infusions work, I should do them. I can get them done in Pittsburgh in a UPMC facility, but I would need to do it in the ICU. I can live with that. All about the compromising. Eventually, they will be offering outpatient infusions, which is exciting.
He officially changed my diagnosis from benign joint hypermobility syndrome to Ehlers-Danlos Syndrome-Hypermobility Type (EDS-HT), which means I can get the splints I need covered by insurance. Since I’ve already done tons of PT and know the appropriate exercises to treat my joint issues, he suggested controlling the pain using a specially compounded cream different from the ones I have been using or have used in the past. There’s a possibility we could try prolotherapy in the future, but it’s absurdly expensive and not covered by insurance due to its “experimental” status. He also wants a special set of X-rays on my neck to evaluate the instability as dislocations of the cervical spine can be very dangerous.
In regards to my feet/ankles, he was trying to move my feet and he said, “Oh my gosh, this is tight! Incredibly impressive…” I was like 🤦🏼♀️. As my neurologist always says, you don’t want to be the interesting case. All he could recommend was Botox (which I’ve tried and failed four rounds of) and tendon release surgery if all else fails. Come on plasmapheresis, do your thing!
We have a good plan in place right now and I’ll need back in a month to go over results. Hopefully by then there is some response to the plasmapheresis.
I had plasmapheresis round 5 today and it took extra long because my blood pressure was quite low, so I needed a liter of saline to get me out of the danger zone. My labs from last week showed significant anemia just 3 treatments in and according to the doctor, most of his patients don’t get anemic until 12-13 rounds into treatment. Overachieving much? Iron tablet a few days a week should address the issue.
Unfortunately, the appointment this morning triggered a horrible spasm episode that have been going on for about 5 hours now, when the resident tried to force my feet flat and was very aggressive in moving my spasmed muscles, relaxing and heat pads it is until I can finish the research paper.