If you’ve been reading this blog for any length of time, then you’re aware I have multiple sclerosis. If you’re new to the blog, well, I have multiple sclerosis.
I was diagnosed in July 2011, about a week before Alaina’s 2nd birthday. But my symptoms started about two months earlier, when I was rushed to the hospital after having a seizure. You see, one Sunday afternoon I had a wicked headache. I told Matt I was going to take a nap in hopes of sleeping the headache off. An hour or two later, he heard me yelling. When he went to our bedroom, he saw me in the middle of a tonic-clonic (used to be called Grand Mal) seizure. (Having viewed videos of people in the middle of a tonic-clonic seizure, I feel so bad for my husband. These are incredibly scary things to watch. I’m sure I was scared during, but I don’t remember anything about it, so there’s that. In fact, I don’t remember anything about the rest of that day. It’s all gone.)
He called 911 and paramedics came to take me to the hospital. Doctors thought I had viral meningitis. They ran lots of tests to look at my brain (including in MRI) and to find the virus, but no luck. As part of my follow-up care, my primary care physician referred me to a neurologist. Since they had never identified the virus and I had been having other MS symptoms since leaving the hospital — namely, pins and needles in my hands, which I was blaming on my anti-seizure drug — she started putting the pieces together and suspected MS. An MRI, taken eight weeks after my hospital stay, confirmed her suspicions.
In eight weeks since the first MRI of my brain, I had a couple of new lesions on the brain, as well as other lesions that had shrunk or grown. They call this waxing and waning of the myelin sheath — and it isn’t good news. Basically, my immune system was attacking my myelin sheath — in other words, my body was attacking my brain.
“Neurons are the structures in the nervous system that allow us to think, see, hear, speak, feel, eliminate and move. Each neuron is made up of a cell body and an axon (the extension of the cell body that carries messages). Most of the axons in the central nervous system are wrapped in myelin, a substance rich in lipids (fatty substances) and proteins. Like the coating around an electrical wire, myelin insulates and protects the axon and helps speed nerve transmission.” — from the National MS Society
When the myelin sheath is damaged, the signals from the brain aren’t transmitted as effectively. The brain and/or spinal cord, doesn’t work properly.
MS is a very personalized disease. My MS is very different from my friends’ MS — but there are some commonalities. Some of the most common symptoms are fatigue, memory loss, the MS Hug (where it feels like something is wrapped tightly around your trunk to the point it causes pain), pins and needles effect, optic neuritis (a diminishing of vision until partial blindness occurs — for many MS patients it is temporary) loss of sensation in your extremities, loss of control of your extremities. The list really does go on and on. However, seizures aren’t a “normal” MS symptom, which is why the doctors at the hospital didn’t immediately think MS.
Fast forward 2 1/2 years to now: I’m doing pretty well. I’m on a daily injection therapy called Copaxone. Its goal is to keep you in remission and extend the amount of time between relapses, also called flare-ups. I haven’t had a relapse since my original episode. *knock on wood!* I battle fatigue, but if I listen to my body and don’t overextend myself, it is manageable.
In case you’re wondering why the drug I’m on just tries to buy you time between flare-ups: There is no cure for MS. Right now, scientists don’t know what causes MS — they have isolated some commonalities among people who have MS, (for example, having mono or shingles as an adult seems to increase your chances of developing the disease) but they haven’t found the smoking gun. So the therapies, just try to minimize the attacks.
One of the things I’ve done since my diagnosis is try to raise money and awareness about MS. I’m a co-captain of a Walk MS team called The Word Herders. My friend Jennifer started this team after her diagnosis in 2010. April 2011 was the team’s first walk — and I was there. A month later, I was in the hospital and two months after that, I was in the MS camp with her.
She is the chairman of the Central Arkansas MS Walk for the second year in a row — go Jennifer! And I’m once again on the steering committee. We’re planning a fantastic walk for next month!
So I’m ending my story post with a couple of pleas. Please join the Word Herders on Saturday, April 12 in Little Rock’s Riverfront Park for the MS Walk. Its about a mile, so you don’t have to be in good shape to walk it. It is a wheelchair-accessible route. Click here to sign up.
If you can’t join us (or be a virtual walker!), then please consider making a donation. The money all goes to the National MS Society. The society is very involved in research and in helping people with MS. Click here to make a tax-deductible donation.
I also invite you to check out the Word Herders Auction Page on Facebook. Each Sunday/Monday, a new batch of goodies (think handbags, jewelry, watches, artwork, etc) goes on the auction block. The auctions end Saturday evening.
Last of all, wear ORANGE on Saturday and Sunday. And if someone asks you why you’re wearing ORANGE, tell them you want to raise awareness of multiple sclerosis!