Diagnosing: Katie’s Multiple Sclerosis

In October of 2012 (shortly after Jason’s azoospermia diagnosis but prior to his procedure that took us straight to IVF) I noticed my arm felt like it was “asleep” for a couple of days straight. I figured the tingley, numb feeling was just due to sleeping on it improperly or a pinched nerve and wasn’t too concerned. But it didn’t go away. And then it started to spread. And with my Factor V Leiden clotting disorder, that freaked me out a little bit. I talked to my nurse sister and she was concerned over it so Jason and I went to the ER.

We were expecting them to check for clotting-type problems. But that’s not what happened. After being at the ER nearly all day, lots of blood work, and an MRI, they came and informed me that my brain was showing a high amount of brain lesions and they believed I have Multiple Sclerosis and were referring me to see a Neurologist the next day to run some more tests to confirm if it was.

I had no idea what Multiple Sclerosis, or MS, was. All I knew is that when you heard that someone had MS, you said you were sorry and that it was a bad thing. The little experience I had with MS was that it was the same level of scary as cancer. Jason was wonderful (how I adore that man!) and kept calm and tried to help me do the same, reminding me that no matter what things would be ok and we’d figure it out. We went home and I did a quick google search and what I found was terrifying–MS has a reputation of being unpredictable and vastly different from person to person, but some common side effects listed were being wheelchair bound, memory loss, inability to move limbs…scary stuff that sent me into tears. Jason let me cry but took away my computer until we could go see the doctor.

Well, Dr. Butrum, my neurologist, confirmed that I did have MS. That first visit was overwhelming. He broke things down for me for what Multiple Sclerosis is. Here’s a quick summary: Multiple Sclerosis is an autoimmune disease that affects your nerves. Your nerves are covered in an insulation of myelin that protects them and allows the nerves to conduct themselves properly. Think of a computer cord–the nerves are the actual wires but the myelin is the rubber insulation. When that rubber covering is damaged, the wires are prone to damage. Depending on where the damage is and how severe it is, your brain will launch different side effects. If you’re interested in learning more about Multiple Sclerosis, I suggest going checking out The National Multiple Sclerosis website. There is no cure for MS, but, MS is making leaps and bounds with the research and treatments available. 30 years ago, there were zero medications available to treat MS. At the time I was diagnosed, 8 were available and since then 2 more have come on the market.

This was a rough time for us. It was scary and unpredictable. Like many people diagnosed with MS, I got hit hard with many symptoms all at once. During my first flare up, I experienced the numbness, tingling, and weakness on the left side of my body and in my legs at times. I didn’t regain normal feeling in my left arm and hand for 8 months. In addition to that, for the first three months I had a lot of difficulty walking and balance problems, vertigo, pain, vision problems, and extreme fatigue. I had a very hard time getting around BYU campus and ended up having to get a temporary handicapped placard so I didn’t have to deal with the stairs and hills. I was discouraged and frustrated and angry. There was no way to know if any of my symptoms would go away or stay or what lay in my future. Needless to say, we had more than enough on our plate to adjust to and our fertility journey was put on the back burner.

Since then, my MS has become more manageable. I have had different rounds of MS flare ups that are a bit more intense and other underlying symptoms that appear more frequently. We’ve learned a lot about MS and have attended different lectures and support activities. I have had wonderful, supportive family and best friends who have helped me adjust, no one more so than Jason. He’s been patient and loving. I hate, hate, HATE needles, so he administered shots to me 3x a week for a year and a half. Though it’s one more crappy trial, it has brought us together even more.

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Jason and I have gotten good at looking on the bright side of things (even if it takes hours and hours of searching past the gloom!) and we decided finding about my MS now is a good thing. If we hadn’t found out about the MS before getting pregnant, and with our hope to have lots of kids closely together, I might not have been diagnosed until we were done having kids completely. Getting treatment sooner at a younger age is giving me a better chance at less intense nerve damage.

So what does MS have to do with our infertility? Well, nothing, other than us taking a break while we adjusted to this hurdle. But Multiple Sclerosis does not affect fertility at all, which is great! In fact, during pregnancy a woman’s body goes into remission for MS until a few months after you deliver. Pretty cool. So why am I talking about it in our fertility blog? Well, we won’t go over it a lot since it’s kind of its own separate thing. But because of my MS stuff, we have more decisions to make than most IVF patients. I can’t take my MS meds while I’m trying to get pregnant, during pregnancy, or while nursing. Some new studies are looking at what fertility treatments can do to a woman with MS and so far, it appears that if you do the hormone shots necessary for IVF and do not conceive, the MS will probably have a pretty rough flare up. Things like that will be brought up from time to time, but the focus of this blog will remain about getting our baby here!

2 thoughts on “Diagnosing: Katie’s Multiple Sclerosis”

  1. Hey, Katie, I had no idea you have MS. My mom did. I’m so glad that diagnosis and treatment has improved so much over the past 25 years–so sorry that you have it, but grateful there are effective treatments for you!! Hugs and prayers.

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