April 22, 2021
Hi I’m new, I have remitting Releasing MS I am JC virus positive which makes me have PML. Is anyone else in here positive for the JC virus? I also have chronic migraines almost daily ... they leave me bed ridden a lot can anyone relate ???
Lori Foster Admin
April 23, 2021
Welcome to the community,
May 13, 2021
I've already done a fair amount of research on PML and I'm glad I did. My chances of getting it are VERY low, even w/ my age (62) and the fact I was on Tysabri for so many years. (These are indicators of who is at higher risk of getting it - age - length of time on Tysabri.) I'm more likely to get behind the wheel of my car and die in a crash than I am of getting PML. As of Dec. 31, 2018 (the latest figures I could find), 804 patients worldwide had experienced PML. Two died from PML-associated complications. Those aren't alarming numbers (unless you're one of the people who died). Plus, most people have the PML virus in their systems. It's just undetected because there is NO REASON to test for it.
Did you JUST start getting headaches or have they been an issue all along? When were you determined to be JC positive? Are you on Tysabri?
No matter what your answers are, you should be talking to your neurologist. Hopefully, you have one that you trust. They will help you through this.