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Tracking Progress in the Ty-Ty Sisterhood

Posted Jul 27 2008 3:05pm

It’s now day nine since my second Tysabri infusion and while I continue to live with some sort of MS symptoms every day, I believe I’m seeing a little bit of a change and some similarities that I plan to chart out and track as the Ty-Ty Sisterhood continues its journey.

The first four or so days after both infusions, I felt very fatigued — especially the first 24 hours. Two days after infusion one I also felt noticeably dizzy — dizzier than normal. In the few days after this infusion I noticed a little bit of cognitive issues — some of the “it’s that…that…that…thing syndrome” and just outright forgetfulness. (I wonder if some of these came along because of the fatigue itself)? But they both have simmered down some. In the first hour to 12 hours after this infusion I had some stomach upset (D/N) and will pre-medicate with Pepto the next time around.

Here’s the good news though. Just five days after infusion two I “survived” crazy air travel and hotel stays and lack of sleep without issue. My energy level this weekend was strong (as I recall it was roughly 10 days after the first infusion as well). Today I walked my 1.3 miles, did some yard work, watered the plants, did laundry and vaccuumed — all with little breaks along the way — but I did them!!!

I haven’t felt my shins burn since the day of the second infusion and my tingles in my fingers have become very light, only really noticeable when I touch my fingertips to something.

I still toe pick like crazy, but oh well, there’s something to grow on there at least.

Last time around, by around 14 days post infusion I began to feel an increase in fatigue (I was shooting for the three week energy surge many Ty-users feel, but only made two weeks). I’m hoping the fatigue will stay away longer this time around.

I still haven’t seen changes in my leg movement capabilities. I still tire very easily when standing for more than 10 minutes. (Isn’t it odd that I’m more comfortable when moving around and in much more discomfort when standing still — resorting to leaning against a wall or having to sit down instead? Many patients with canes indicate that this is the purpose of using a supportive device — to help with standing). I continue to walk almost daily and I’m about to begin a weekly swim regimen as well.

The hubby and I have made a deal — after infusion six in November, if I don’t see improvement in the leg department, we’ll look into physical therapy. Four months is still a long ways away though. Many good things can happen!

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