I’ve been doing pretty well on my MS medication. If you’ll remember, I was pretty freaked out about starting medication.
Now my white blood cells have tanked and I’m back to freaking out. My WBCs keep dropping and I’m officially in the zone that makes me immunocompromised now. For once, my relative isolation is a good thing, because I am at serious risk of catching anything that’s going around and I wouldn’t be able to fight it off.
My neurologist is handling it appropriately with having me do blood tests every two weeks. And I’ve researched the usual protocol regarding the drug and I would have to see my WBCs drop by half again for most doctors to take me off of it (though I’m not sure when my neurologist would.)
I’m also high positive for the JC virus, which is something many people have and don’t know it. But when your immunity is low, you’re more likely to get this potentially deadly re-activation of the virus called PML. I know, I’ve written about this before.
But all this has me thinking about taking my chances and going unmedicated again. I’ve looked up other MS medications I could switch to and all of them have potentially scary side effects, many of which carry the same risk of lowering WBCs and activating PML.
The thing is that I know my neurologist is not going to be okay with me deciding to go unmedicated. I’m not sure if my husband would be, either. But having gotten a relatively common but what is to me a very scary side effect from the first med I tried makes me very wary to try another.