Monday, August 27, 2007

Is it Fingolimod or is it Avonex? Only the scientists know for sure.

I'm not sure I'm taking to being a lab rat too well. It was okay for the first week. I was skating through life just taking my little dinky capsule every day and managing just fine.

Then today was the dreaded Shot Day. I had to get over the fear of the honking big needle and just do it, like Nike says. I was up at quarter to five for some unknown reason and sat around thinking "well, four more hours and I'll have to do that shot."

Then I decided that was stupid to do a count down and get myself all worked up, so I got the shot out of the fridge and went ahead with it. Everything went exactly as it did last week when I was a spectator while my nurse gave me the shot. Smooth as silk, the needle slid right in. I didn't feel a thing.... It was no biggie at all.

Then about a half hour later I started feeling a little dizzy. I was at the computer and sometimes it will do that to me, so I got up and walked away from it. Next thing I know I'm feeling nauseated as if I were sea sick.

Up until this morning I was positive I was on Fingolimod. Now I'm not so sure. Yes, my heart rate did drop on the initial dosage, so I probably am, but what's the deal with how I'm feeling today??

One thing that's hard about having a chronic disease like MS: every little thing that happens to you, you want to attribute to MS or the meds you are on. Could it be that I'm experiencing... a stomach flu? I often forget that I'm still prone to all the normal stuff that health people have.

I'm feeling better now, 8.5 hours after the shot. I'll know for sure next week if I get sick on Monday again.

I'm not so sure I like not knowing what I'm putting in my body. I thought I would read the enclosed pamphlet that came with the Avonex to see what the side effects are. Turns out that great big piece of paper (that's folded in half at least 8 times despite what MythBusters says is the absolute maximum possible) is only the instructions for administering the shot -- written in about 13 different languages.

Apparently when you are in a clinical trial even the FDA approved stuff that you take doesn't come labeled and packaged the way Joe Customer would get it.

I'm so glad I restrained myself and didn't go running to the local ER with a fist full of strangely labeled weird drugs they have never heard of. I"m sure it would have blown their minds. No, instead I got out a pocket notepad, and, like any good participant in a science project, I recorded my symptoms and the date and time. I'll let my neurologist make heads of tails of all the chicken scratch when I go for my 2 week check up. That's why he gets the big bucks.

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