I had the blood draw a week ago today and the phone call with the results came on Monday. At least they hadn't gone UP, but they didn't go down. They were "about the same".
My clinical trial nurse says the neuro is on vacation until next week so she's going to get with me then, after he's had a chance to review the data, and let me know what the course of action will be. Naturally, I wanted to know if I'd have to get off the Gilenia (a.k.a. FTY720, a.k.a. Fingolimod). She said the numbers weren't so high as to warrant that, but we may have to keep tabs on it more often than the every-3-months check-ups we'd been doing.
From a hypochondriac's point of view, I would really like to know what a liver that is excreting high levels of enzymes is supposed to feel like. First, I need to google where my liver IS so I can being imagining pains in the appropriate spot.
I kid you not, though, I have been having trouble for the last few days with a spot in my upper right abdomen, just beneath my ribcage. I've had this pain before and everyone thought I was nuts when I described it. It feels EXACTLY like a charlie horse in my guts. On a scale of 1-10, the pain, when it hits, is oh.... somewhere around 100. "Owie! Owie! Owie!" is all I can say as I writhe around trying to get in a position that will make the agony stop. It's worse than labor pains, that's no lie.
It only lasts for a few minutes, but I am always alarmed and sure I am dying.
Last time I had the charlie horse was Christmas day. I had to get out of the kitchen and go lay down and roll around biting my lip trying not to scream.
I contributed it to wearing pants that were too tight which created the dreaded Muffin Top Effect, and then trying to bend over. Certainly one's guts cannot survive that kind of punishment without some objection. I have never in my life (before now) been overweight to any degree, so since I gained 20lbs after quitting smoking, I have had to learn all about the discomforts of carrying around 2 10lb sacks of potatoes I can't set down.
Before gaining the weight I had never had this weird gut cramp, so I am motivated to lose the extra baggage in hopes of never experiencing it again.
Besides the weight issue, I thought perhaps it could have something to do with the nerves controlling my guts. Kind of like spasticity of the intestines or something. Once you've had MS for a decade plus, you catch yourself blaming it for everything from an eye twitch to not being able to find your keys.
Then, in casual conversation the other day, I mention the gut cramp to a friend of mine. Turns out she (who does NOT have MS... or maybe she does? hmmm) has the same charlie horse thing happen to her! We started to compare notes.
We are both lactose intolerant but she has actually brought up the phenomenon with her doctor and was told it is related to the IBS she has also been diagnosed with. I have never had an actual diagnosis of IBS but naturally I googled it and now display all the classic symptoms. I guess maybe I have it. Who knows? But I'm going to keep wearing my comfy sweat pants and let it all hang out until I can get in to see a doctor to find out what's going on.