what is MS, anyway?

world ms day logoIt’s World MS Day, a day that people around the globe share their experiences with MS to raise awareness of the disease and to drive research for treatments or a cure. There’s a great article here if you’d like to learn more about World MS Day, or you can go here to read all kinds of technical stuff about MS in general.

I have Multiple Sclerosis, MS for short.

What does that mean? Well, sclerosis means scars, so literally it means “multiple scars.” But where are those scars? In my brain and on my spinal cord.

MS means that the myelin sheath has been destroyed in some parts of my nervous system. Picture an electrical cord or a stereo wire: there are wires inside of a plastic sheath, right? In your body, that sheath is made of a fatty substance called myelin. Its presence helps the nerves to transmit their electrical impulses correctly. When myelin gets damaged, scars form on your brain or spinal cord and the messages traveling down those specific nerves get thrown out of whack.

Scientists believe that MS is an autoimmune disease, that tiny Pac-Man guys produced by my own body are nibbling at my spinal cord and brain. (Okay, that’s not how demyelination is technically described, but you get the picture.) The thing is, the scientists have no idea why this happens, so they can’t stop it or prevent it.

People don’t always understand that living with MS means something different for every single person. It all depends on which specific nerve is being attacked.

Let’s say someone told you that they had a computer virus. You might say, “Oh, yeah, bummer – I had a computer virus and I couldn’t print,” but they might respond, “Print? I can print! The computer virus I have makes my web browser crash whenever I download something.” Someone else might say, “Man, when I got a computer virus, I got the Blue Screen of Death.” Obviously, it all depends on which part of the computer system gets attacked by the virus.

That’s how MS is. If the nerves to your eyes are being attacked, you are going to have very different symptoms than someone whose myelin is being destroyed on the nerves to their arms or legs or bladder. The human body has two kinds of nerves, too – sensory nerves, which affect what you feel, and motor nerves, which allow muscle movement – and depending on which type of nerve is being attacked, symptoms can be very different. In fact, no two people with MS are going to have the same course of the disease.

So what does MS mean for me? 

MS means I’ve lost normal sensation on my left side from the waist down. I can feel it if I’m touched with a Q-tip, but not if I’m stuck with a pin. I don’t know how to describe this, but sometimes my leg feels “creepy,” and sometimes it feels like I’m being touched through a wetsuit. I’m very thankful, though, that I’m not completely numb, as I was when I had my first attack and kept falling because I couldn’t feel my foot and losing my shoe because I couldn’t grip with my toes.

MS means that my foot and leg have the pins-and-needles feeling you get when your foot falls asleep and is waking up – you know, the one where you don’t want to put any weight on the foot at all … and my foot has it all the time. Is this “pain?” Not really; that would be insulting to people who have actual painful pain. But it’s sure not comfortable. Luckily, this is managed by taking medication three times a day; I’d say that takes it from 11 on a scale of 1 to 10 down to a 4. I’m also lucky that the MS hug that I had in my first attack – a severe pain that wraps around your torso – has gone away completely.

MS means that my left leg is weak, as some of its motor nerves are affected. Because the quadriceps are not firing on all cylinders, my leg gets really tired, quickly. I joke that if my right leg walks one mile, my left leg thinks it walked five. But I can absolutely walk at this point, and I can’t tell you how thankful I am for that.

MS means that my brain cannot communicate with my bladder properly. My bladder doesn’t send my brain the signal that I have to go… though ultimately I will feel an ache that tells me I’ve waited too long to try. My bladder also doesn’t receive signals telling it that I am trying to go, and I might sit for ages waiting for something to happen. Luckily, this is managed by using techniques to physically make my bladder empty, and by taking daily antibiotics to prevent the bladder infections that result from not peeing regularly or completely. And I feel blessed to have urinary retention rather than urinary incontinence!

Having Primary Progressive MS means that I don’t have periods of remission like most people with MS do. It also means there are no disease-modifying drugs (DMDs) that work for me. Instead, I do a monthly one-day course of prednisone (referred to as “pulse steroids”). Prednisone comes in tablets ranging from 2.5 mg to 50 mg. I’ve got the big 50 mg ones – and I take TWELVE in the morning and another TWELVE at night. Yep – over a gram of prednisone. It’ s supposed to keep my immune system suppressed so it stops attacking me. Does it work? I have no idea. But if there’s a chance, I sure want to take it. Though I wish there was a DMD that worked for PPMS – and though the side effects of massive amounts of prednisone can be hellish, I am so glad that there is something they can try.

MS means wondering when the next symptoms will appear or worsen. It means wondering if every little thing related to my body or my mind is caused by the disease. It means feeling pretty crummy about one-third of the time – either from prednisone or fatigue – and perfectly normal for another third. (The last third could go either way.) I feel incredibly blessed to be able to continue living my normal life. I’m even thankful that I can still work, though there are days I wish I could just stay in bed!

I’m always aware of having MS (because of the weird leg), but most of the time, it doesn’t seem like a big deal. I think that’s why I am always startled when people say, “Oh… I’m so sorry;” they must know a person with MS who has died, or is in a wheelchair. That’s not me, yet. Will I end up with a cane or in a wheelchair? Probably… but so will many elderly people. Will I end up dying? That’s a guarantee. But I will die with MS, not from MS.

6 thoughts on “what is MS, anyway?

  1. Oh, Li’l Lou, that last comment just brought a tear to my eye. That’s actually a very beautiful, very positive sentiment. Bussis to you for thinking it up.

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    1. You are right – it is beautiful and positive. I wish I could say I thought it up! It is actually something that kind doctors and experienced MSers say to the newly diagnosed to help them not be so frightened, since there are so many preconceived ideas about how horrific MS is. (And it IS, for some people, I know… but – thankfully – not for everyone.) xo

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  2. Ack! The guilt! We must have walked 12 miles in Boston in one day and YOU were the trouper and I was the whiner. (Of course, this is learned behavior over our multi-years of being sisters 🙂 ) You are amazing, and I am so glad that you LIVE life and continue to bring us all joy.

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  3. A M A Z I N G Lori! I am thankful that you have the gift of writing and are using it to educate and support. Love You Lori!

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