MS Awareness Week: Our Story

The year 2004 was both a happy and sad year for our family. It was also one of the most stressful years of my entire life, for multiple reasons.

I was expecting our second child, and while physically the pregnancy was easier on me…I was a tightly wound ball of nerves for months. I doubt anyone really wanted to be around me, honestly. Diva was born in July of that year.

She was not an “easy” baby. And by the time she was about 3 months old, she began having severe ear infections that were extremely difficult to clear up…which led to a host of problems. Problems that included us yanking the kids out of daycare to stay with my mother-in-law. (And for anyone who knows my relationship with my in-laws, that was anything but an easy decision for me.)

Multiple Sclerosis symptoms diagnosis

In late October 2004, my husband JB suddenly developed numbness in one leg. He’d had back issues before, so we thought maybe he’d just slipped something out of place. He was sent for X-rays which showed nothing, but the family practice doctor knew something was up…and referred JB to a neurologist.

The neurologist did a battery of tests on JB…MRI, blood work, lumbar puncture, the works. We weren’t impressed with the doctor in the beginning, because he seemed to be less than forthcoming with information for us. But on December 21, 2004, JB was officially diagnosed with relapsing-remitting Multiple Sclerosis. I remember that day very well, and not knowing much about the disease at the time…I was pretty much thinking death sentence.

He was quickly started on Betaseron shots every other day, which he loathed every single day he had to take it. He has a fear of needles, but he usually did surprisingly well with the shots. Eventually, he would fight me about taking them…and once, he hid the fact that he wasn’t taking his medication from me for months. He hated the needles, and he hated the way the medication made him feel.

Multiple Sclerosis: The Early Years

During the first few years after he was diagnosed with MS, he had a few difficulties. Severe and sudden mood swings were common. At times, they still are, but they aren’t nearly as bad as those early days. We learned that he didn’t handle heat very well, and that it caused extreme fatigue…which isn’t good considering we lived in South Georgia, land of year round summer. He does much better with summer heat these days. He had one episode of optic neuritis, but with JB it was more common for me to wake up one morning to him telling me, “I can’t move.” I would get up, rush to get the kids off to school, and rush back home…to pull him out of bed, practically carry him to the bathroom, get him dressed, and in the car going to the neurologist. Not an easy feat for a 5 foot tall woman to do with a man who can barely walk! I was thankful for the occasional times that the neurologist didn’t actually need to see him, and I was able to go pick up meds and keep JB comfortable at home until the relapse passed.

All the while, I knew we were lucky. Some people go YEARS without getting a diagnosis, and I’m so glad we were led to doctors that picked up on JB’s symptoms so quickly. At the same time, JB can look back on various things that happened to him in the years leading up to 2004, and now suspects he was having mild symptoms even then.

Discussing MS with others

I don’t claim to know everything about Multiple Sclerosis. Far from it! It affects so many people in so many different ways. I only really know well and understand what my husband has. Over the years, I’ve fielded many, many questions and comments about Multiple Sclerosis…these are just a few of them:

  • “But he looks so…normal!” Well, yes. To look at him most days, you wouldn’t see anything different about him. But when he’s really tired, he tends to limp a fair bit on his numb leg. He has a variety of canes to help him walk during these times…and he loves to dress up as Dr. Gregory House, MD for Halloween.
  • “I thought a person with MS would be confined to a wheelchair.” Some people with MS are wheelchair bound. My husband just doesn’t happen to be one of them. There are different forms of Multiple Sclerosis, some more severe than others.
  • “Are you worried that he’s going to die?” Naturally, I always worry about my husband. Yes, he has a lifelong illness that could potentially shorten his lifespan, but eventually…everyone dies, and I can’t spend my life afraid that he’s going to go before me. (and yes, I have been asked this.)
  • “What about your children? Are they going to get this too?” Multiple Sclerosis isn’t contagious! It can have genetic factors. Soon after JB was diagnosed, we learned that one of his cousins also has MS…but to our knowledge, no one else in his family has it. I admit to breaking down in our pediatrician’s office soon after the diagnosis, begging to know if my children were destined to have this disease. It’s in their genetic code, I suppose.
  • “You must be Superwoman! You work full time, have two kids, and a sick husband.” I wish I was kidding about this one. He’s not sick. I’m definitely not Superwoman. We do what we have to do, and that’s that.
  • “I’m glad he never advanced past Stage 1.” This one actually came from my mother-in-law, many years after JB was diagnosed with MS. I guess this one burned my cookies the most, because I thought she’d try to actually learn about an illness that her ONLY SON had…at least enough to know that it’s not diagnosed in stages, but rather in different forms of the disease.
  • “Do you guys tell people (example: employers) that he has MS?” I get that for some people, it might be a good thing to keep it relatively quiet. We’ve never really just volunteered the information, but if someone asks, we oblige with the truth. In the beginning, JB had to take a good bit of time off work to get to doctor’s appointments and such, therefore he felt he needed to share this snippet of his health situation with his manager. They were extremely understanding and kind, which is one of the primary reasons we chose to move to another city so he could stay with the company rather than starting over with a new employer.

    Here and Now

    Here we are 8 years later, and JB is doing very well. He still has numbness in areas of the same leg that gave him so much trouble 8 years ago (he describes it as a constant ‘pins and needles’ feeling.) He is seeing a neurologist here that he really likes, and he was able to start taking a new Multiple Sclerosis medication called Gilenya last year. Since starting it, he has had absolutely NO relapses! We pretty much think this medication rocks, and we are both so very thankful that he got the opportunity to take it.

    March 11-17th is Multiple Sclerosis Awareness Week. You can learn more about Multiple Sclerosis at the National MS Society website.

  • [image credit: via Gaylord Health, via Pinterest]

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