I didn’t want to write this blog so bad, cog fog is preventing me from remembering this weeks big news! NAG, no, Remyelination, no, EBV, yes, that was it!
Scientific American: Epstein-Barr Virus Found to Trigger Multiple Sclerosis
(This is the best article I read, delving into the history of the 20 year research, that began shortly before my MS Diagnosis. It’s a really good read.)
I was diagnosed in 2004, a year after a mysterious virus the urgent care doctor didn’t know what it was. It had spread the characteristic rash over half my body. This thing had been popping up on me, from time to time, for years. Ever since I was 12. Then we were trading in our dying 1977 Thunderbird for a maroon Plymouth Acclaim. My parents were between a rock and a hard place. Risk not being able to get to the dealership when our car finally did give up the ghost, or bring their sick 12 year old to the dealership. To sit and lay the top half of her body across a card table. They gave me money to get hot chocolate from the coffee vending machine. My older brother there, to also have hot chocolate and look after me.
After what seemed like an eternity, night fell, the paperwork was signed, and we were headed back home, a 30 minute drive, in a snow storm. Clunk, sputter, pull over on the side of the road. The battery is dead. Those assholes forgot to charge it, or what would have been better would have been to replace the freaking battery! We were stranded. I was feverish and itchy. The car that was supposed to be the solution to our problems, became our problem. Dad pulled his jacket on and headed outside, to hike through the snow aside an NC Mountain Freeway to a rest stop about a half mile up the road. Except at the quarter mile he found a home for elderly patrons. They told him to go get their family, and bring them to get warm. An old woman was so kind to us, and told me to lay down on the couch and gave me a blanket. She was our hero, as we called for help.
Was that the Epstein-Barr Virus? Probably. I haven’t been tested, or if I have, I forgot about it. I just always assumed that stange fever, rash, was the start of it. At the time of my diagnosis it seemed a likely contender, whenever I sifted through the sands of time looking for a cause, any cause, of being diagnosed with a chronic, incurable disease at 20 years old.
If I seem jaded about this EBV news; it’s because I am. It’s coming for many of us, a little too late. I have been kind of trying to avoid it actually, because something about it seems so triggering. Like I wanna put my head in my hands and sob. I don’t feel like that very often these days. I have a good life, a wonderful family, my MS is RRMS, and controlled by my DMT, Ocrevus. Yet I struggle everyday with symptoms that may never leave my body. A feeling of my head being under sand, tingles and numbness throughout my head and face. I just would rather stick my head into the sand a little while longer. But I read the article. I realized the people this study entailed. The painstaking data collected over 20 years. The blood samples given by service members. The unfortunate ones who developed MS, also infected with Epstien- Barr Virus. People who at one point in time, were also that teenager. Infected by a virus they thought they would get over. Hopefully this published study leads to a world freer of MS. Then I’ll be able to put down the fear of my kids getting this dreaded disease. This research may point a way to a much needed Epstein-Barr Virus Vaccine, with a phase 1 clinical trial underway for an mRNA vaccine. May God be with you til we meet again. 🤞🏼🙏🏼🧡
Before you go, check out this excellent video from MS Translate, going into detail on this latest published research, and also the German study that was published last year. Brett Drummond also asks some questions about the future of an MS Vaccine and the potential of that treatment clearing the EBV, still active in our bodies, and if that could potentially stop the damage to our brains and spinal columns from Multiple Sclerosis.
I was diagnosed with Mono at 15, I always thought there had to be a connection. MS at 30
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Sorry I missed your comment! Yes, I always suspected that connection too. I think I first got it at 12. 🧡