Last week I had my 24-week update for the MIN-102 trial at NHNN in London. It was the usual early start with fasting bloods. Then the tests began with the 6 minute walk followed by the physical and neurological exam, the strength and balance tests. After this, I was booked in for the echocardiogram at the UCL hospital on Euston Road at 3:31pm. Unfortunately for me, the computer which operated the balance machine wasn't working so I had to go back to NHNN afterwards to take the balance test at about 5pm. This delayed me getting home because otherwise I'd have been finished after the echocardiogram.
Aside from the echocardiogram, which apparently we all have to take now to make sure there aren't any adverse effects on the heart from the water retention, everything was as expected. The tests went better this time: I walked further and was stronger, but I have no idea what kind of difference they are expecting, if any. What I do know is that I am still hopeless at balancing with my feet together and eyes closed. The physical and neurological exams were the same and there were the same peripheral neuropathy lifestyle forms to fill-in.
The echocardiogram is on a different site and it took me about 20 minutes or so in a taxi to get there. The clinic is also not close to the entrance of the other hospital. However, once there, they saw me half an hour early and the procedure took about 20 minutes so I left before the appointment time. According to the radiologist, my heart "squeezes fine" so there shouldn't be any follow-up.
After waiting out a fire alarm test back at NHNN, I had the balance test and then went home with 2 boxes (30 bottles) of the medicine to tide me over to the next appointment in May.
The results of the tests seem to confirm my hunch that I am seeing some incremental improvement in my symptoms. It's not huge and is helped by the fact that I certainly saw some deterioration in the early part of this year before the trial began, but I am finding moving about easier, especially when I'm not tired. When I am tired, after walking for a while, I just degenerate back to my usual form.
Hope you're all doing well