We JUST walked in the door and I know some of you are waiting to find out how things went, so here's a quick update.
In a nutshell, everything went great!! The doctor said I was "just the kind of candidate we are looking for." He went over my medical history in detail with me, I filled in some of the gaps. We discussed some of the other treatment options, discussed the bone marrow transplant itself, and then we did a physical exam.
First was the walking test, this was what I was most nervous about, but it went very well. He had me walk up and down a long hallway in the hospital. I could go as slow as I wanted I just couldn't stop, touch the wall, or obviously use my cane. I was able to go 320 meters!! So that puts me officially at 4.5, according to the EDSS.
After that he did the normal gamut of reflex testing, sensation testing, eye exam, coordination testing, etc. I was pretty nervous going in because, although we gave ourselves more than 4 hours to get there (mapquest said 3 hours), we were a little late. It was rainy all the way out, and then of course we hit Houston rush hour going into downtown. And THEN, the address on the Baylor website for the MS clinic was incorrect, so we were about 10 minutes late when we finally parked. Ben rushed ahead to make sure the doorway we were heading to was the right one, and I was trying to hurry, and my foot caught on the ground (brick paved sidewalk), and I started going down. This is always how I trip. My foot will catch on the ground and I just do not have the reflexes or muscle strength to be able to stop myself. By the grace of God, there was a woman walking past me just at that moment and she saw me about to fall and quickly told me to hold on to her, so I grabbed onto her shoulder and was able to stop myself from falling. Of course this really shook me up. The last thing I needed was to walk into the clinic with a ripped skirt and bloody knees because I fell coming in!! Also, I got really worried about my walking test. I had forgotten to take my Baclofen this morning (that's the medication I take for spasticity), so I was extra spastic and stiff. Of all mornings to forget! The reason was just that I wasn't doing my normal routine and I am, if nothing else, a creature of habit. But anyway, I was saying lots of prayers and I knew everyone else was praying for me, and sure enough everything ended up fine.
I told Dr. Hutton I hadn't taken my medication, and maybe in the end it is better for him to see me as I "really" am, rather than how I am with medications masking some of my underlying symptoms. In any case, the resident working with him got "perfect examples" of several classic MS reflex symptoms.
So anyway, he is going to recommend me to the board that makes the final decision, but he did say that they base their decision on his summary of my case, and so it almost certainly means I will be admitted into the study. He says it takes about a week, so I should hear by the end of next week or the beginning of the next. At that point, I'll be going back and forth to Houston a lot for preliminary testing of all sorts. I'll find out more about the timeline of all of that once I get the final green light.
So, that's the good news! Now my legs can do whatever they want to do. Although I also have permission to do additional steroid treatment as needed.
Thank you for all of your prayers and support. I needed it this morning. It wasn't a very auspicious beginning to the appointment, but it turned out really well.
The boys did well while we were gone. They spent the night at the twins' friend Adam's house (he's also the bishop's son), and then Mosey went home from preschool with a friend in his class.
So we are going to have a little celebration tonight with some friends, and then go to bed early! We are tired!
Friday, January 18, 2008
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1 comment:
That was such wonderful news and I appreciated Ben giving the update right away too. You were so fortunate that the lady was there to help you not to fall all the way too!
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