Quick Update and Common Questions Regarding My Multiple Sclerosis

It has been quite some time since I have shared any sort of update on my Multiple Sclerosis health. I notice sometimes friends and family are nervous to ask and/or people will mention that no news, must be good news. And so far, you are right. The fact that you haven’t heard much from me is good news that I have not to my knowledge had any sort of relapse in a couple of years now. 

I continue to be amazed at how confusing Multiple Sclerosis is to “everyone else”. Heck, it is even confusing for me at times. I try to explain things, but trust me when I tell you, I know when it goes over your head and you just don’t get what I am saying. Here are a few common questions I get, I will do my best to explain.

How common are relapses and how do you know when you are likely to get another one?

It is most common for people to have one or two attacks every two years. However, Multiple Sclerosis is so variable that it can be more or less in that amount of time depending on the person and their disease course. 

Based on that timeframe, I would be due for an attack any day now. However, I am staying optimistic that my timeframe will be longer. I am on a disease-modifying treatment that is supposed to help protect my body from attacking itself, and I am hopeful that it is working and going to work for a long time for me. My hope is that we caught my MS so early that maybe jumping into treatment will protect my brain for longer. 

Does your MS bother you/are you symptom-free?

I would say in general, my MS doesn’t bother me day-to-day. I do sometimes get blurry vision if my body overheats or I get stressed. Or, I feel a bit of fatigue, but nothing that I couldn’t blame on my monthly period or just being a mom. The only time I truly felt the impact of heat bothering my MS was during the heatwave we had this past spring when we were well into the 100s. I felt like a blurry blob. Otherwise, I still like to try to put the milk in the pantry or things in the wrong places from time to time, but I was doing that long before my diagnosis. 

Do you have to do infusions? 

Nope. Not at this time. Many of you have probably by now seen the ads for Ocrevus (it is the only ad on TV for MS). That is one where you go and do infusions a couple of times a year, and it is supposed to be a great drug for managing MS attacks, however, that is not one that my neurologist recommends for me at this time. I am taking Vumerity, I shared a post about this a while back, but I take two pills twice a day with food. There are a lot of rules and recommendations on what you are supposed to eat (percent of fats/protein – along with not exceeding too many calories) with this medication and they say it is supposed to help reduce side effects. The common side effects are upset stomach, flushing, nausea. I from time to time get flushing and my body feels off for about 30 minutes to an hour. It usually happens around lunchtime and My skin turns red, feels pringly, and I just feel “off”. It is hard to explain, but I can feel it coming and know when I look bright red. I wish I knew exactly what causes it, but I eat almost the same breakfast every morning, so I am not sure my food is the culprit. It could be stress-related. My only other thought is maybe it happens if I put off lunch for too long. I am not sure. But, the good news is I have only experienced nausea once and it was an evening where I forgot to take my meds until way after dinner. My doctor said it was fine as long as the side effects didn’t bother me. Well, now I know not to take it on a completely empty stomach. 

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Life is interesting. I actually feel like I might be at one of the healthiest points in my life right now even with my MS. While I do sometimes feel like an old person with a big pillbox/sorter full of my meds, vitamins, and supplements, I am thankful I am taking care of my body. I am being more cautious and aware of what vitamins I am taking. I am eating more fruit and vegetables than I ever have in my life. I am very aware of the importance of a balance of carbs/fats/protein and the role that each plays in making sure I fuel my body and support my health. 

I am still going out for walks every day and sometimes lately I am even jogging/running a bit instead of just walking. I have been seeing a physical therapist to heal my diastasis recti from my two pregnancies and try to rebuild some of the muscle loss from both pregnancies. 

The biggest issue right now is keeping my family healthy. We have been hit hard this year with colds and stomach flu. Luke has been sick a total of 6 times since September. By some miracle, I have only caught two of the colds and the stomach flu completely skipped over me, I am not sure how I was the lucky winner on that one. I am really hoping that this year is an immune-building year for Luke since he seems to catch anything and everything at school. And, maybe this will help Audrey whenever she starts preschool. Every time one of my kids has a runny nose I feel completely defeated. Here we go again. I am praying this stops quickly.

I am truly thanking God this year for my health and my ability to do life normally. I am thankful that I have made it another year without a relapse or any big health concerns. Thank you for all your love, support, and prayers. I feel God’s protection over my nerve health and body and am grateful for being able to use my body to exercise and play with my kids.