Trial Update

I met A at Sonora for my blood draw and she said that she brought everything so I wouldn't have to go to Hope at the end.  The blood draw was easy peasy.  While we were there, A took my pulse and blood pressure.  At the doctor's office, I filled out the questions, got my temperature taken, and filled my cup.

I saw Dr. M and he did the usual tests.  On the eye chart, I was able--barely--to read the bottom line with my right eye; I had to go two lines up for the left eye.  The walking and balance tests seemed the same.  I'm not sure that my calves are hanging off the end of the table when I do my laying down tests, but today they were and I had a lot of trouble with the leg-strength tests, pushing up or down against his hands.  I felt that I was weak in my back, which I noticed when laying that way.  He mentioned that the weakness he saw was not consistent with MS weakness, so I did explain that I have had fusion in my back due to surgeries.  During the sitting tests, it seemed that I had some trouble with the "toe" tests, where he asks me to pull up or pull down, and when he tests when I feel a vibration stop.  Of course, he doesn't report anything to me, but he kind of retests.

Next, I saw Dr. G, who explained my situation to the medical student in attendance.  The Dr. always seems so confident that I don't have progression and I'm doing so well, but I still don't understand how I haven't had progression when I had that numbness last May.  The random stuff doesn't count, because it doesn't last more than 24 hours or isn't new.  Whatever.  I agree that my case is very mild, but I find it hard to act like it doesn't affect me.  We also discussed my endocronologist (who he knows, but I only saw her the first visit--I see someone on her staff now.)  He said there is a 25% chance of thyroid issues with this treatment, so of his 4 patients, I'm the one (only one) with any thyroid reaction.  He went on to discuss the extension trial, which he recommends for me.  He believes I would have another MRI at the start of the extension, but he didn't seem to know much yet, so I didn't not ask more.

When we were done, I discussed the extension with A and she explained what she knew of the extension protocol.  All the trial participants will be on Alemtuzamab.  Since the control group was on Rebif instead, everyone in the trial gets the same infusions again--I will get the 5 day infusion this year and the 3 day next year.  She recommends everyone participates in the extension, as it seems we are all doing well and it's free medication.  She did think that there would be MRIs around the time of each infusion.  All the monthly testing would continue, but the quarterly would be somewhat different because Dr. M will know during the "open trial" that we're all on Alemtuzamab.

As my thyroid issues appear to be caused by the trial drug, and my Vitamin D issues are likely related to my MS, I want to note a change in my overall health.  I feel very good (for me) today.  I haven't had any serious (back/butt) pain days for over a month, with the exception of the precursor to some terrible cramps when I started my period.  I'm pretty sure my periods are 3 weeks apart now.

I'm seeing numbers on the scale I haven't seen for a while.  This morning: 182.  I'm not sure if six months of Synthroid and Vitamin D are kicking in or if it's something else, but I've lost about 10 pounds over the last month or two.  I have not significantly made any changes to my exercise or diet.  I still try, but not always, to eat pretty well and get some "loving movement" into my day.  I try to eat some salad and fruit every day, but I don't always.  I have started drinking an almost-daily coffee or coffee beverage to help things move along, and wonder if that could be helping, but I started seeing the decrease before I really committed to this coffee regime.  I will continue to (somewhat casually) monitor the situation!