I have been asked a few times over the past several years if I could give a recap of my ms and clinical trial experience. You will note that I am not going to be using caps for ms because I feel that capitalizing it gives it way too much importance and power over my psyche. If I don't write "ME" in caps all the time, ms certainly isn't going to get higher billing.
Anyhow, I figured, now that I have probably lost every last follower I ever had due to ending the trial, moving my blog and then remaining silent for months at a time, it's about time to give that recap.
I've gotten quite comfortable, thanks to Novartis and the Gilenya Guide Network, at telling my ten minute shortened version of my experience before crowds of ms-ers in person, but due to time constraints I can't tell The Rest of The Story (remember Paul Harvey?)
Here I can pretty much feel free to express myself as I wish and the only time constraint is with how fast you are capable of reading it.
I was born in Wellsville, NY, a small town on the Genesee River almost on the border of PA, in the western part of the state. I lived there until I was 12, played in colored foam frequently in the valley behind the button factory, had a puppy that had distemper, and spent little time in the sunshine. When I was 16, my boyfriend got Mono and naturally I was exposed to it.
For anyone who has ms or cares for someone with this hideous disease, you know we've all pondered the reason we got it, and my story seems to already have me covering all possible bases, touching on every theory.
LONG STRANGE TRIP TO DIAGNOSIS:
When I was in my 20s I was working in a small print shop doing everything from taking the orders, to typesetting, paste-up, running the press, and doing the binding work after.
This weird thing started happening with my arm but only at night. I would wake up from sleeping on my side and the TOP arm would be sound asleep. SO sound asleep that one morning I woke up and went to get out of bed. I picked my husband's arm up and flung it off me. I freaked out when I realized it was attached to my shoulder and was actually MY arm.
I told a friend and she suggested I go see her doctor since I didn't have one.
I sat in an exam room and explained my symptom to this guy. He didn't so much as make me stick out my tongue and say "ah". He did no exam whatsoever. He just sat there and said matter-of-factly, "You have ms, there's nothing anyone can do for you, and you'll end up in a wheelchair."
I left there in tears, totally shattered, and immediately ran to my mother. She worked in a hospital in the medical records department at the time and so she had connections to get me in to see a neurologist. Why I didn't go to her in the first place, I'll never figure out, but so be it.
I see the neuro and he does the whole "How many fingers? Touch my finger, then touch your nose. Walk heel to toe across the room for me," thing and afterward he said "You don't have ms, you have carpal tunnel syndrome".
I let out a huge sigh of relief, hug my mom, talk about what a scare THAT was, and then go on about the business of living. I forgot the whole thing after a while because my arm quit doing that.
So now we fast forward 10 years. I was pregnant with my youngest son, about six months along, when I started going numb in a wide band that started from mid-line on my stomach in front and wrapped around my left side to mid-line in the back. And it itched.
I ask my OB about it at the time and he just shrugged and said "it's probably just shingles. Don't worry about it."
I blew it off because apparently the doctor didn't think it was anything. It went away and I forgot all about the weird incident.
I had a rough year that year. I was diagnosed with carcinoma in situ after a routine pap when I found out I was pregnant. The doctors wanted me to abort and have a hysterectomy right then and there, but I was of the mind that you shouldn't kill the messenger.
So we compromised and I was to have a biopsy of my cervix every 3 months. It was at my second biopsy, when I was roughly seven months pregnant, that the doctor broke my water doing the biopsy. He swears he did NOT, but I started leaking amniotic fluid that day and for the next week I was told it was the baby leaning on my bladder and I was leaking pee.
I finally INSISTED that it was not pee, and once everyone agreed my water was broken, I was transported to Shands Teaching Hospital in Gainesville, FL for a 10 day stay as they tried to prevent me from giving birth for as long as possible. I was on high dose antibiotics to keep baby and me from getting an infection, and finally gave birth on July 19, 1999 by c-section.
Three months later I had my hysterectomy.
Three months after that all hell broke loose.
I woke up one morning -- my 38th birthday to be exact; January 31, 1999 -- and had the mother of all stomach flues. I have never been that sick before or since. Writhing on my belly to the bathroom where I gave a Linda Blair Exorcist reenactment that should have won an academy award. I was that sick.
24 hours later I was fine, but within a few days I developed this incredible deep-down itch on the back of my neck. So insatiable was this itch, I could have dug down through the meat of my neck and never reached the itch to scratch it. I tried everything. None of the over-the-counter remedies for itching had any effect. I even tried a heating pad.
This went on for a week or two.
Then one morning I got out of bed and when my feet touched the hardwood floor, my right one was cold and the left one felt nothing. I remember thinking it was odd and that my foot must be asleep, but as the day progressed, it never woke up.
Over the course of the next two weeks, the numbness spread from my left foot to my right and crept up to my waist. All the while I was getting weaker and weaker. Every step I took felt like I was slogging through mud.
I was suspecting a pinched nerve and just putting off any sort of doctor visit, but once it got to my waist I worried that if it went higher maybe I'd have trouble breathing or something. Best to go get it checked out.
I saw a doctor at the local walk-in clinic and after poking and prodding and listening intently to my recount of the last few weeks, he said "I think whatever is going on is definitely neurological and we need to get you to a specialist."
A few days later I was in the office of a neurologist and after a surprisingly brief amount of time recapping the chronology and getting whapped by that rubber hammer and poked with the poky thing, I found myself laid up in a hospital gown, trying to keep my butt covered with that pathetic gown and being attached to an IV drip of some serious steroids.
I was there for three days. Over the course of that time I had an MRI of my whole body, a CT, a nerve conductivity study, a spinal tap, and a enough blood drawn to fill a punch bowl at a vampire convention.
Day three of my hospital stay, the doctor comes a-calling. He tells me the tests all indicate I have "probable ms".
I say "probable?"
He says "well, I can't give you a definite diagnosis until you have 2 lesions separated by time and space."
That sounded a little sci-fi to me and I'm not a Star Trek fan, so I had to have him explain.
"In order to get a definite diagnosis, you have to have 2 lesions on your brain at different times, located at different positions on your brain or spine with different symptoms."
So I say "when do I find out that it's definitely ms? What do we do now?"
He said "We wait."
I said "How long?"
He said "No telling. Could be this is the only episode you will ever have, or it could be a matter of months."
Two months later I had my definite diagnosis. I was hit with a brain stem lesion that caused me to get so dizzy and off balance I thought the whole world was a Bat Man set -- from the old TV show, not the movies, kids.
I had hearing loss in my left ear and a horrid ringing that drowned out most everything else around me. The ringing has never really completely gone away to this day. If I try to go to sleep in a perfectly silent room, all I can hear is "OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO". I have to have the TV or music, or something to take my mind off it.
So, with that attack, I went to see another neuro (at the first one's urging) to get my second opinion. The head of neurology at Shands Teaching Hospital in Gainesville, FL told me "Yep, he's right. It's ms." He said it with a friendly smile on his face like he was saying "Nice shoes!"
And this concludes Part 1, the diagnosis. I promise I won't leave you hanging for long. :) Stay tuned...