MS Journey #32

More research please

Years ago I put my name down to volunteer for research into Multiple Sclerosis(MS). I was actually one of the participants in a pilot test for Betaseron in Winnipeg, Manitoba before it was added to the formulary. I am willing to do almost anything to help find a cause, cure, test potential cures , etc. I’d basically try anything – let’s rebuild some Myelin – that would be the ultimate for me personally.

Once I was asked if I wanted to participate in research about fat reduction. Fat reduction? What has that got to do MS. A side affect of my MS subcutaneous injection medication was craters in my skin. Sort of like divots on a golf course.

These injections were placed in the upper thighs, buttocks, and stomach area. These injection sites, I was told, are to be hidden from sunlight. I was supposed to rotate every second day. Thighs, buttocks, and then stomach. I hate needles yes that’s right hate. I especially hate injections in the stomach area. So I decided to skip that area and just use the other two options.

Over time these craters developed (fat reduction?) and if you saw me naked you’d see them on my upper legs and buttocks. It’s an awful sight – the craters are bad too – ha. Thank goodness I did not do my stomach area.

I did not sign up for that research project.

However I recently said yes to a research project that is looking at a different way to diagnose and monitor MS. It’s a small dime sized device that is attached behind the ear.

As part of the research I have to get an MRI which is about 35 minutes long, a cognitive capabilities test which lasts about two hours (in my case maybe three – ha). And perform some balance tests while wearing the device.

I have had lots of MRI’s so for me this is no big deal. However this one was way different. If you don’t know, an MRI machine is a closed-in long narrow tube that you lie inside. It creates a magnetic field and there are very loud sounds, at different frequencies, and at different intervals. They provide an image of whatever is being looked at. Ear plugs or music are provided but it’s so loud you can’t hear the music. They also put your head in a cage and you have to stay completely still.

They give you a inflated rubber ball with a tube attached and it’s placed in your hand and told to squeeze it if you have any problems or concerns like you want to get out.

I was given particular instructions that at some point I have to open my eyes for ten minutes. I’ve never done that before I’m like the ostrich that hides it’s head in the sand – I don’t want to see what’s going on.

This MRI is way different. The noises, frequencies, and cadence are all different. I wish they had a clock inside so I could see how much longer I have to stay inside. Normally I can handle it but I had difficulty this time. I made it through the first ten minutes, the second ten with my eyes open and about three quarters way through on the last ten. There was something about the sound and cadence of the last ten that got me. My legs, then my hands, torso, and then my head started to go numb. And at the same time I’m vibrating from the inside – I feel super weird. And if I can’t feel my hands I can’t feel the ball I’m supposed to squeeze if I want to get out – I start to panic and I squeeze it but I’m not sure if I’m actually squeezing it so I push it against my leg. Fortunately they know I’m squeezing and I hear a voice, and the table starts sliding out. Phew. Apparently I was almost done and they got enough for the research.

Twenty six years ago I was diagnosed with Multiple Sclerosis and still no known cause or cure. Research, obviously, is the way to solve this. The more the better.

It feels good to do my part.

Take care