Sunday, October 24, 2010

Placebo? I think no.

I thought it about time for an MS update on here. Surprisingly, there has been very little worthwhile MS material to discuss. Although, it's occurred to me now, that that lack of trouble? is worth posting about.

(It shouldn't be all about me bitching all the time, right?)

Roughly three months ago, I began participating in a drug trial through the hospital at the University of Pennsylvania. (you may recall the ridiculous nature of the cognitive tests... yeah, they're still just as fun.) Any time you participate in a drug study, there's no real way to know if you will be given the active meds or a placebo. However, since any drug is accompanied by side effects, it's usually not too hard to figure out which group you fall into.

I am not in the control group.

Meaning, I am about 98.64% certain that I am taking the active meds. The active meds, in this study, are a form of estrogen. I'm also taking my Copaxone, (which is my daily shot - a drug therapy that is meant to slow down the progression of the damage that MS does to the central nervous system) but I have now added 4 little 2mg pills of Estriol to my daily regimen of meds and supplements.

(I mean, what's 4 more pills in a pile of oh so many??)

Obviously, I can't, with 100% certainty, confirm that I am on the active meds, but, I mean... come on now.... they're hormones. The women reading this will understand right away that when your body is adjusting to hormones, there are some obvious signs. The men reading this will simply have to be grateful that I am not going to describe in any sort of detail what those signs are.

(you're welcome.)

But also? I actually feel pretty good.... in that, I feel almost normal most days. Which, though not anything to throw a parade over, after so many months and months of feeling like I was losing my mind.... normal is a welcome reprieve. I haven't had an uncontrollable crying fit since sometime mid summer. (I have cried over known circumstances.... I'm still more emotional than I would like, but not irrationally so.) And a lot of days I can pick my daughter up off the floor without feeling like she weighs three times her actual 36lbs.

Most days, I am tired, but it is normal tired. Not fall-down-and-cry physical exhaustion. Some days, I am irritable - most notably, more so since the introduction of the additional hormones - but not irrationally irritable. I mean, hey, I haven't felt the need to stab someone in who knows how long! And, by comparison, hormonally irritable doesn't seem that bad.

I still have some aches and pains. I recognize that when I hit a certain point and continue to push past it, the aches and pains get worse. The MS is still there, lurking, and waiting for me to slip up and allow it a reason to remind me that it could take me down at a moment's notice. But, for the most part, the hormones seem to keep it on a shorter leash.

Why is that?

I'm so glad you asked. :-)

The only time, in nature, that science has seen MS go into a type of "remission" is when women who have MS are pregnant. Something in the hormones that the body produces in pregnancy - most likely the same hormones that prevent the body's immune system from attacking the developing fetus as a foreign body - stop the immune system from attacking it's own central nervous system. In some cases, MRIs have even revealed that lesions have shrunk in size during the remission - a process that rarely occurs on it's own. (MS can strip myelin faster than a body can repair it - which means once there's scar tissue, it usually lasts.) MS is a degenerative disease, which basically means that it just continues to get worse. Except in pregnant women.

(This also sort of explains why, in men, the disease ravages their CNS so much more quickly - they have so little of the hormones to begin with, you know, being boys and all.)

((Of course, they do have the whole peeing standing up thing going for them.... but, it's hardly a wash, really.))

So what is the study, well, studying? It's a two year long research program that's being conducted on volunteers across the country who have MS. The study is looking to establish two things: concrete evidence that the hormones increase the daily functionality of an MS patient and decrease relapses, perhaps evidence that the hormones can heal or shrink the pre-existing lesions, and - hopefully - show that there is not an increased breast and/or uterine cancer risk with the hormone. (Which, clearly, would somewhat offset the beneficial aspects of the meds. Just sayin.)

But, long story somewhat shorter? I feel *almost* like myself a lot of the time. Which is nice. I had almost forgotten what that person felt like. I definitely forgot what it felt like to feel simple joy at the simple things in life. I'm still not back to what I would have been pre-MS.... and I likely never will be.... I may always feel the need to stab on occasion, it happens.... but, I'm getting there. In some ways, the darkness is subsiding a bit. A little more light is filtering through. And I'm feeling a little more hopeful.... most days, anyway.

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