OK, so, if anyone even noticed, I last posted nearly a week ago because my hands have really been acting up and typing, eating and even dressing myself was a real challenge. Well, things just got worse and worse.
Now, I've been trying to start the Fingolimod Clinical Trial since October and haven't been on any DMDs since then. One of the screening tests is having a body check (moles) done by a derm. Did that the week of Christmas so I didn't anticipate getting any results until after the new year. On Monday, January 5th(?) I got a call telling me that the three moles that were scraped off tested positive for Moderate or Severe "Junctional Melanocytic Dysplasia." They have to be excised down to clean tissue before I can start study drug. That does not scare me, but it definitely pisses me off because my start date was pushed out to February 18th. Damn!
Have I lost you yet? I'm sorry, this is kind of long and might include some redundancies.
Anyhoo, since I'm not actually IN the study yet, I don't have all the super-secret contact phone numbers if I need to reach anyone over the weekend. But, I DO have email addresses, so I sent a note to the study nurse and her supervisor telling them what was going on with my twitchy, spastic hands, reminding them about my dermatology appt Monday morning and asked them to call me on my cell before my appt (8:00).
Well, the supervisor called me at 7:35, we talked and she told me to call her when I got out of the derms office. Did that about 8:55, she got me in front of a doctor shortly after 10:00 and I was hooked up to a Decadron IV before 11:30 (to be repeated into tomorrow).
Of course, this pushes back my trial date again, but I just have to stay event-free for the month of February which, hey, only has 28 days in it this year!
And I've got stitches in my arse!!