I went to the dinner on Monday night, hosted by the maker of the latest and greatest drug for treating Multiple Sclerosis. I listened patiently to the presentations, and asked a couple of intelligent questions.
After the meal was cleared away, I took the opportunity to introduce myself to Dr Goodin. Surprise surprise, he was MOST interested in taking me on as a patient, in his neurology practice at UCSF (University of California San Francisco). With a family history like mine, I’d make a swell lab rat! My words, not his.
As he had suggested, I called his nurse, Marcia, and explained my situation. After going through her standard reasons why NOT, she finally acquiesced my comment about having met the doctor the previous evening, and that he was quite amenable to seeing me. That little hurdle cleared, I was offered an appointment within two weeks: Tuesday September 9th, 9AM. I graciously accepted, and listened patiently as she explained how the Doctor does NOT normally see patients without their MRI’s in hand. I guess I am to be honoured, and humbly grateful.
This morning another call came from UCSF, this time from Jess. She had been speaking with the Doctor, and he was concerned about my statement about having very few pills (Gilenya) left. She lectured me on the inadvisability of not continuing to take this medication. I know that the drug trial folks warned of dire consequences that would befall the patients that went off the.
The folks in Canada had always stressed that not taking the pills could mean my removal from the trial, but apparently the US counterparts see it differently. Should I stop taking them for ANY reason, I would be forced to start over from the beginning! This would mean that I’d be admitted to hospital and watched carefully for 12 hours after the administration of the pill that I had been off of for whatever period of time. Hell’s Bells, do they think I’m going to grow an extra leg after resuming this medication?
Jess also asked me to come in for 830AM instead of 9AM, so I could fill out some forms. Given that San Francisco is a one hour drive from here without the added joy of commuter traffic, I’d say we will be leaving here at around 7AM.
So this evening, I have to carefully count the remaining pills, and advise Dr Goodin’s office of the number, so they can courier any extra pills I might need to my home. This group really blows hot and cold! First, they say that they won’t touch me with a ten foot pole without my paperwork. NOW they are falling over themselves just to make sure everything is kosher.
Definitely, a much nicer place to be in, now that I’m one of them.