Oh Cece, I'm so sorry the appointment didn't go well. Can you leave a message with your MS specialist's receptionist to call you back regarding whether or not there are new lesions on your latest MRI?
Hopefully, my little story will make you feel better about what happened at your neuro appointment:
Unless I change my mind or chicken out, I have to walk into my annual neuro appointment next week to face the "MS specialist" with whom I had a fight a year ago over CCSVI. To say the least, she was ADAMANTLY against CCSVI testing and treatment and refused to write the script I needed for the Doppler US.
To say more, she definitely did not like learning from me that Albany Medical Center had just done its first CCSVI procedure, one of the first on the East coast -- the look on her face showed she was stunned to hear this news, but how was I to know that she did not know???
I kept thinking that for her to hear of such important news from a patient rather than from her colleagues or the hospital administration couldn't be easy for her; after all, she was Albany Med's new MS specialist, and she hadn't even been notified about a CCSVI procedure that had taken place in her very own hospital.
There I was, feeling empathy for her embarrassment while she's yelling at me, seemingly taking out on me her anger at not having been informed. It was unreal. I left that appointment shattered, in tears, and shaking so hard that I couldn't even drive myself home. Many of my symptoms flared, and I couldn't get out of bed for a month.
You see, she actually threatened me by sternly telling me that she would not let me have Tysabri if I had the liberation procedure, so it wasn't surprising that I almost fell over backward when I later found out that she is none other than Dr. Siskin's "neurologist partner" for his CCSVI clinical study.
Since I do think I need to start Tysabri within the next few months, I can't tell her that I was liberated this past August or that I'm seeking a second opinion this spring. If it wasn't for my need for Tysabri, I would not keep her as my neuro; in fact, I wouldn't have a neuro at all.
Cece, I wish I had your tact and ability to know what to say and what not to say during appointments. You handled yourself perfectly, and I'm very proud of you. No one deserves to be lectured to in the style of a rant, and I'm sorry that you were treated that way. Take heart, though, for your upcoming appointment with Dr. Sclafani will be the best doctor appointment of your life.