The April Update After a Virtual Visit with my Neurologist

My friends often ask how I am doing. My family likes to say, “how is the MS?” This post is to let you know that I am doing well. My body has sent me some not so subtle hints to slow down in the past few months, and I am finding many ways to enjoy this collective pause button that the universe has hit on the entire planet. I may be physically distanced from you all, but I feel closer to you now more than ever.

Are you wishing you had the insight to purchase a lot of Zoom stocks before all this went down? Yeah, me too. It has been an incredibly helpful platform to connect with coworkers and loved ones, alike. I was even able to “meet” with my Neurologist on Thursday.

We obviously had a chat about MS and COVID-19. It was reassuring to hear that I am not crazy for wearing my N95 mask to the grocery store, even if I am the only one. I am more likely to get sick because of my compromised immune system. Getting sick is an exacerbation on my body that can cause an MS flare up. And with a compromised immune system, it is probably not a good idea in general.

On a positive note, he said if it helps me sleep at night, there is some interesting research coming out of China and Italy regarding MS and COVID. It is far too early to tell and much more research needs to be done, but for some reason, it seems like MS patients on DMTs (disease modifying therapies), who therefore have a weakened immune system may fare up to 5x better than those with a fully functioning immune system. My doctor thinks this is probably due to the whole cytokine storm effect that COVID has on your body. A fun little video on that and Coronavirus as a whole right here. Per very preliminary results and records, only one person with MS has died over there, and they were untreated with DMTs. My takeaway – and don’t quote me on this – but I am thinking that not having an immune system that can attack with all it’s “A” game might be a good thing in this case. It of course doesn’t explain why older people who naturally have weaker immune systems are dying at higher rates. So, who knows…

To bring you up to speed, I had my first half dose of Ocrevus in mid-February. The second half dose was late February. About two months in and I feel great. While my B cell count was immediately reduced after even that first half dose, it can still take up to 6 or 12 months for all of the old cells that still “remember” to attack my myelin sheath around my central nervous system to clear out. It’s too early to tell what kind of lasting effect this medication will have on my body, so it is too soon for another MRI. Provided things with Coronavirus clear up a bit by July, I will do one then and have another follow up with the doctor. In the meantime, I have to do some follow up blood work to make sure all the levels of all the things in there still look normal. (That piece is magic and mysterious to me. I’ll leave the blood analysis to the doctors.)

My next maintenance dose, as the doc calls it, is in August. And after that, I only need to be attached to an IV all day twice a year (every 6 months.) That is, unless I get pregnant. For those of you who are wondering when little Straws will be joining the nest, know that yes, we would like to have kids, and are finally ready, but don’t want to force it. There are many layers that have gone into our decision to wait just a bit longer (yes, that kills me, too), but right now I am focusing on getting my body on board.

Funny that I never thought that everything wouldn’t immediately adjust to not taking birth control anymore. Almost a year ago I took my last little blue pill, and it was 5 months before I got my period. Another 4 for it to normalize and for me to start ovulating. But in hindsight, duh. I had a tiny pill full of hormones pulling the strings for 15 years. It makes sense that my body had to say, “wait, I have to do this on my own now? Ok, ok, give me a minute.”

In the midst of all that, a turn of events led me to a new neurologist and I ended up on a new medication. There aren’t really any studies on how it effects pregnancy. Plus, Mom (me) has to be in good enough shape to be able to handle pregnancy and the after effects it may have on my MS. Or, more like how my MS will react to the pregnancy. I’m also working through some food sensitivities and a candida cleanse with my Naturopath doctor – but that is a whole different side bar. The long and the short of it is, after discussing with my doctors, it would be best to wait and get some things straightened out first. Then, 2 months after my next dose of Ocrevus this summer, we shall resume operation make a baby in the fall. Maybe. No pressure. Who knows, we might not be able to have biological kids and so we’ll cross all those bridges when we get there. For now, it’s me time.

I continue to do daily yoga and meditation, eat well, and am getting lots of walks in with the dogs. I commit myself to checking a few things off my to do list a day and try to constantly scan for gratitude. Some days I am more tired than others. Some days I have some tingling, buzzing sensations happening. It’s not pleasant, but it’s certainly not as bad as the intense nerve pain I was having in December and February. I do my best to connect with the joy that radiates from within and not base my happiness on external situations in my life. Basically, it’s not always easy, but my baseline is happy and hopeful.

Oh yeah, and happy Easter 🙂 Whether it is the power of Christ that compels you on this glorious day or you throw some respect toward the old pagan traditions of honoring the birth of Spring and mother moon, all the power to you. Take some time today to think about what Easter means to you, and enjoy. Even if it’s just all about that ham, I hope you have a wonderful day.

All kinds of love to you,

Aimee

Published by Aimee Straw

Diagnosed with MS at 29, my journey toward higher heart and soul really began to unfold and flourish a few years later when I started to accept, and embrace, who I really am. There are many lessons to learn along the way and I am excited to share my story in the hopes that I can connect with and inspire others.

4 thoughts on “The April Update After a Virtual Visit with my Neurologist

  1. Hi Aimee,
    My friend Eliza F. turned me on to your blog – she knows you from college. I haven’t read all your posts, but from what I’ve seen, we have a lot of similarities (MS diagnosis, age, location, decisions about medicine and pregnancy). If you want to chat, let me know! 🙂 I really like your blog so far and can’t wait to read more!

    Liked by 1 person

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