My internist personally made an appointment (wow) for me to see a neurologist she feels is knowledgeable and could be of help. I just left his office and I have mixed emotions, but surprisingly not related to the medical aspect. I can’t decide if he totally, utterly creeps me out (hello, personal space issues!) or if he’s just a friendly doc and I’m overly sensitive to certain things. My gut feeling is probably right, but my brain can’t process that right now. It’s too much.
Either way, I was uncomfortable and just kept talking and talking to distract from that feeling.
Aside from that, he admitted I’m my own best doctor, nurse and physical therapist since Ehlers-Danlos Syndrome is a mystery even to those aware of it. He increased the dosage of my medication for polyneuropathy and wants to see me again in 6 weeks. In the meantime, he said he’d do some research on EDS, although he suspects I’ll still have better knowledge despite his medical degree. I’m glad he acknowledges this, but I still pray that one day someone will tell me “I have an idea!”
As for my idea of alternative, off-label drug treatments, he’s not comfortable taking that risk. I told him I’m very close to black market purchase of these medications. I’m completely serious. Mexico, I may be visiting you sooner than later.