Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.
MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.
From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.
My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.
While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.
I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?
People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.
The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.
Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.
I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.
I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.