The Suck

I think the last time I left you in the saga of my brain, I'd had one MRI and was waiting for the results of my blood tests. Well, the Tuesday after Ironman, as I was sitting in the airport in Spokane, WA waiting for my flight home, I got a call from my neurologist with the results of my slew of blood tests; they had all come back negative. "Oh good!" I thought. She replied with the doctor's equivalent of "hold your horses there, missy," and told me that she would like to order another brain MRI, this time with contrast. So that was scheduled for Friday, three days later.

I went in on Friday morning for my contrast MRI. Friday afternoon at 4pm, as I sat in my office at work, my neurologist called to confirm my worst fears: I have Multiple Sclerosis.

I just... I can't even begin to describe the devastation of that moment. All my hopes and plans for my future potentially wiped out with two little words. Worst-case scenarios playing in my head: visions of not being able to draw, of losing my independence, of winding up in a wheelchair someday.

She went over a lot of things that thank goodness I wrote down because there's no way I was really processing what she was saying right then. After we hung up, I shut my office door, collapsed in my chair and just sobbed. It was a sketchy drive home. It was a rough weekend.

The following week my parents flew me back to Nebraska; spending that time with family was oh-so-good for my soul. I got to laugh with Emma (4), meet Avery (3 months) for the first time, and just soak up some love for a few days.

The only bright side to my particular diagnosis is that I have a few things that seem to indicate I might experience a milder progression of the disease - that maybe I won't wind up in a wheelchair someday, maybe it won't be anything more than something annoying that pops up every now and then: Women who are diagnosed before the age of 30 generally have a better prognosis; I made that cutoff with a couple months to spare. The first five years of the disease are usually indicative of how it will progress over time; based on my MRIs, I've had it for a few years now and I've only had one episode of symptoms, which is a good sign. I am otherwise healthy and strong, which can only help.

Two Fridays ago I was scheduled for a lumbar puncture, another test that is used in confirming an MS diagnosis. So many things to hate about that situation: The procedure itself, which feels like someone is trying to jam a dull stick into your spinal cord when they are inserting the needle. Of course there are all kinds of other nerves in the area, so you get electric shocks all down your (strapped down) legs whenever they happen to brush by one. When they withdraw the cerebrospinal fluid for testing, it feels like someone has attached a vacuum to the bottom of your skull and is trying to suck out your brain. Needing a ride to and from the hospital and not having a person--someone who I would unhesitatingly call on--and so having to ask friends for help; I know they don't mind doing it, but I still hate inconveniencing people. The headaches you get for days afterward. It was...unpleasant.

Two days ago I had an appointment to go over the results of the lumbar puncture and discuss what the next steps would be if things didn't look good.

With the lumbar puncture, they were looking for oligoclonal bands (O-bands) in my cerebrospinal fluid; when they show up, it indicates an inflammatory process in the central nervous system. Regular, healthy people have zero. Sometimes, if they've had a case of meningitis or encephalitis or something in the past, they'll have one O-band. Four or more is an indicator of MS. I had eight.

So now I have to decide whether I want to start treatments right away or wait and see if/when I have another episode (the facial numbness back in April was my first). The upside to starting medications now is that it delays the next episode and can even slow the progression of the disease in the long run. The downside is the treatments are all subcutaneous injections that have varying levels of awful side-effects, so if you're otherwise feeling fine at the moment (like I am), it's hard to make that choice.

My treatment options are:

Option A1 or A2 - injections either 3x/week or 1x/week. Downside: can make you feel like you have the flu, lasting anywhere from 12 hours to 2 days after the injection. Every time.

Option B - injections every day, but you don't get the flu-like symptoms. Downside: can cause a reaction of large lumps and bumps at the injection site (upper arms, thighs, abdomen, hips). These usually go away after a few days, but can be unsightly. Can also cause permanent lipoatrophy, where the fat at the injection site dies off and leaves a permanent divot in your skin.

So that's what I have to decide: Do I risk it and wait and see if/when I have another episode, losing out on that important early treatment? Do I want to feel like crap for 2 days every week? Do I want to have crazy lumps and divots on my body?

I never considered myself to be a vain person until choosing between these options became my reality - it bothers me more than I would have thought.

My neurologist recommends starting right away. She said she's usually in the more conservative, wait-and-see camp, but based on all of my tests, she thinks I should start now. She recommended I get a second opinion if I want one, and I think I'm going to do that; not because I think they will tell me anything different, but because I'd rather have two doctors recommending a course of action than just one.

I have another appointment in a month; she said I could tell her what I have decided then. Just...how do I even begin to make that decision?

Please pray.

(PS - Believe me, I know it's hard to know what to say. Something to the effect of "I'm so sorry. That really sucks." is perfect.)