MS Update

Well, it’s been about a year since my diagnosis, and that means it’s time for another thrilling visit to the Neurologist. It’s like going to Winnipeg – cold, a bit dreary, with spurts of activity and some very nice people. (And hopefully no food poisoning). 
The Good: 
  • Generally speaking I am doing extraordinarily well. 
  • The neurologist ran through the standard neurology work up and he’s also very pleased with how I’m doing. 
  • My hair has stopped falling out.
The Challenges: 
The drug I am on (Tysabri) is an extremely effective and powerful drug, but not without risk. 
  • The drugs make me pretty sick. 
  • The fatigue is still a thing. Working less, having naps and structuring my time helps. I’ve had to say no to a lot of things I used to say yes to, and that has been very hard on relationships and my self-esteem. 
  • I tested positive for a virus called JC. In some rare cases, on Tysabri, you can develop a fatal complication called PML (Progressive multifocal leukoencephalopathy). If you have JCV, you can get PML. For now my viral load is very low, but I will have to be closely monitored. 
  • If my viral load gets too high, they will have to pull me off the Tysabri. This is not a great outcome, because if you remember from last August, my disease is quite a bit more aggressive and I have a lot more lesions than anyone is comfortable with. The tysabri seems to be doing a great job of holding things in check and allowing me to get on with my life. There aren’t any other drugs out there that do this as well as Tysabri. 
  • The magazine’s at the neurologists are still out of date. In fact, they are even more out of date than they were last August! 
The Next Steps: 
  • Another MRI with contrast (so an hour in the machine).
  • Regular tests to make sure that my JCV load doesn’t get too high. 
  • Keep on with the Tysabri until I can’t. That day will come, but we hope not for another few years. 
  • Reminding all of you that might be inclined to google PML – yes, it’s a rotten thing, but the incidence is rare and I’m being very closely watched! I know from experience, this is not the disease to google at 3 am when you can’t sleep! 
  • Another MS Walk on Sunday May 24, organized by Travis. If you want to walk with us, register with Team Spitters. If you want to donate, here’s the link. If you have donated, thanks very much!
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1 Response to MS Update

  1. loribeth says:

    (((Hugs!))) Glad to hear you are doing well, all things considered. I promise not to Google PML. 🙂 Re: the outdated magazines, do you have an e-reader your can tuck in your purse? I much prefer paper myself, but it sure comes in handy when travelling (reduced luggage weight & space) & sitting in waiting rooms!

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