Wednesday, February 13, 2008

the whole shibang

So, after going back and forth, I've decided if I'm going to go through with this one blog lifestyle, it means one blog.

I don't mean to shock anyone who didn't already know, but one blog means, everyone gets to know. A few months ago I was diagnosed with MS. Not the end of the world or anything too serious, but it is a chronic autoimmune disorder (malfunction, abnormality, condition... whatever).

I've had a while to get used to it, but it still seems odd sometimes. For the most part, I still look, feel, and act the same. But the doctor keeps telling me to pretend I'm normal but remember I'm not. I think it is a "personal problem" of the doctor's to barrow a quote.

As far as I see it, as long as I stay on maintenance drugs (which are a bummer but not too bad), neither me or the doctor can really do anything to change my diagnosis or the progression, so why worry too much? I'll stay healthy as long as possible and prepare as if I won't stay healthy just in case. At least I'm using the time I got.

Its not like I'm going all fatalistic and refusing treatment. As much as I hate it, I'll go for injectable therapy if it means I'll maintain a "normal" lifestyle as long as possible. (And is literally my only option)

And now, MS for Dummies

For anyone who knows or cares, so far my case is what is call relapsing remitting (basically the catch all for newly diagnosed people or people who have the mildest form of MS). That means that sometimes I have symptoms, and sometimes I don't. Kinda like cancer, but not as serious (no - my doctor isn't the best at describing things). The other NOT cancer piece is that I can't take a drug to kill off the MS cells, mostly because MS is caused by rouge T cells attacking the nerves in your brain.

Basically something goes wrong (yes mutation) in a (or many) T-cell(s). It goes crazy and decides that the fatty sheath that protects the nerves in my brain is bad, and eats it. Thus, the nerves no longer send and receive data correctly. Over time this can get pretty serious but doesn't have to. Long story short, some people have more crazy T-cells than others, so they have more damage more quickly, ultimately more disability.

The bad part is that unless the T-cells destroy enough myelin (fatty covering), you don't know the damage is going on. Long story short, I may feel fine, but my body could literally still be cannibalizing itself on a cellular level.

The other bad point, as mentioned, is its not like I can kill off all my T-cells. While immune suppressing therapy, like anti-rejection drugs for transplant patients, and cancer drugs are used to fight MS, it is only used as a last resort for VERY serious cases. Its not exactly a great idea to try and knock out your immune system if only a few cells are causing problems. It is kinda important.

On the positive side, you can mess with your immune system, or trick it. I'm on a drug that somehow helps your body to either not have bad T-cells, or it stops them from attacking your nerves even if they are bad. Researchers don't quite know which.

Also, luckily, enter the MRI. MRIs show how many "hot spots" or demyelinized areas there are in your brain. At this point, while it is obvious that I have a few sclerosis (scars) on my brain, I don't have many, and the ones I do have are mild. With the drugs, I should be able to minimize the number of relapses, flare ups, episodes (that is my favorite) that I have.

There is a small to medium change, the drugs will stop working, or for some reason that my body will develop a more resistant and severe form of MS, but my doctors don't think that is too likely considering my age and the fact that I sought treatment quickly. We'll see.

At least now I can officially say I'm not quite right in the head. I am "not all there". My synapses aren't firing on all eight cylinders. You get the idea. It makes a pretty good party joke until people start getting all funny because they realize you aren't lying.

1 comment:

M. Gunby said...

Yeah, so I'm just catching up, but is this where I can chime in and say that I've always known you weren't quite right in the head?

^_^