Hello, and happy Wednesday, good people of the blogosphere! Today, I'm getting a little personal with you all and discussing MS. So many folks don't know what it is or how it behaves, and since March is Multiple Sclerosis awareness month, I thought it was a good time to get into it. If you're not interested in learning more, feel free to move on. However, if you are wanting to know a little more about this disease and my journey with it, grab a blankie and scroll on.
Let's get into it.
Multiple Sclerosis, better known as MS (or Mister Sinister in many circles) is a nerve demyelination disease. Myelin is the soft covering over your nerve endings, and MS causes the body to attack these soft parts and destroy them. That's the simplified version. We'll get more in depth here in a minute, but first, I'd like to tell you about my personal journey with this disease.
I traveled via airplane to see my son graduate high school in Iowa. When we were airborne, I fell asleep on the plane. This isn't something I usually do--naps don't happen for me and never have, but I passed right out. I simply could NOT keep my eyes open. I did the same thing in the car on the drive to the hotel. Weird.
I figured it was just my new glasses. You see, I'd been having some weird vision problems and assumed I just needed a bit of help. I was like that the whole trip, and I'd just fall asleep in random situations. Okay...
We came back home via airplane. It was the next day when all Hell broke loose. I woke up feeling like someone had put me on a Tilt-a-Whirl, hit the start button, and left it running. I was dizzy as all hell, nauseated, and exhausted. My husband urged me to see the doctor.
Doctor A (PCP) put me on steroids and antibiotics, assuming I had an inner-ear infection. A month later, I was still dizzy. I went back to see that doctor again. He told me to find a neurologist and make an appointment. I looked up reviews and found the best neurologist in my area. Keep in mind, I was at the height of my career and suddenly couldn't write. I was in a bad place and was sleeping all the time. It took another month, but I got in to see Doctor N.
SHE said she thought it might be MS, but she had to do a lot of tests to confirm it. Here are all the things we did:
- Bloodwork (to rule out Lupus and other autoimmune things)
- Infectious Disease Doctor (to rule out Lyme)
- Vestibular Testing (to rule out that inner ear)
- MRI (to check for lesions on the brain)
- Spinal Tap (to check for: WBC count, neurofilaments, and Oligoclonal bands [the most important])
Only then could she say, with 98% certainty, that I had MS and could start treatment for it. You see, there's no test for MS. You have to rule out everything else it could possibly be, and even then, there's a slight chance that's not what it is. However, every single one of my ducks were in a row, and my lesions were mid-brain, which impacts speech, hand-eye coordination, and several other things creatives need. There was a need to be super aggressive, so she started me on a popular drug that worked wonders.
My fatigue went away, my dizziness subsided, and my hands started to cooperate a bit better. I finished the books I was working on. Yay! I felt like a human again. Through the years, I've had a couple of flares and med changes, but overall, my MS is under control. This was in 2017. This September will mark my eighth year fighting this crap, and thank goodness for intelligent doctors. I'm not sure I would've survived everything that was happening to me.
Now, back to the potential things MS can cause.
I know you've probably put it together by now, but MS can cause a ton of things to go wonky in your body. This is one of the reasons it's so difficult to pin down. It can be literally anything because of the nervous system. If something goes down, it can seem like it's related to something else (see vision problems and inner-ear crap above). Some people lose the ability to walk suddenly, and some folks simply have a weird rash.
It varies from person to person, but an intelligent neurologist will be able to discover what's going on.
If you met me, you'd wonder whether I have a disease at all because it's so well controlled. That's one of the reasons they call it an invisible disease. Sometimes you see it, and sometimes you don't. When I'm in a flare, you see it. I can't write; hell, I can't even sign my damned name (an automatic thing your brain does). Nothing gets done because I'm just tired all the time. Not tired like someone who's sleepy, but it's massive fatigue--almost like narcolepsy. I can't hold my eyes open and can sleep for days. Pain is a constant friend, and my scale probably is at a one when yours is at an eight. I've acclimated.
Many people with MS also take a lot of OTC pain medication. Don't judge them.
So, if you know someone struggling with this disease, be gentle with them. They can only do so much. You probably won't see the pain, but trust it's there, and try to be understanding. Mister Sinister is a quiet, vicious beast.
I hope you all learned something from this post! If you have questions or comments, feel free to drop them below. You do have to have a Google account, and I apologize for that, but the SPAM has been horrendous here. Help a sister out and just log in, mkay?
Well, that's all for today, folks!
Until next time, WRITE ON!
Jo
