First Friday Follow-Up

This time, it is all about me. Or more specifically how my MS is doing (or not doing, based on your view). And I know this isn’t the fist Friday in this month, but I’m just getting this site restarted, and ideas come at random times.

Since my medication, Tysabri (generic name: natalizumab), is working so very well, I’ll probably post updates on my well-being with MS only once-a-month. That is unless I were to experience an episode/exacerbation/attack. But once again, unlikely due to this overwhelmingly dangerous yet tremendously effective medication. Don’t worry, I’ll go into Tysabri sometime in the near future.

Actually, let me back up some. Shortly after diagnoses around late summer  2007. I went to visit my then new neurologist, the great Dr. K, and he put me on an Interferon (Avonex to be precise), which is a once-a-week intramuscular injection.  Yes, a once-a-week needle stick that can leave you with ‘flu-like symptoms’. To be completely honest, it sucked. I absolutely loathe needles, probably from my burn when I was around two years old. And MS is not a good disease to have when you hate needles. Especially when you’re getting stuck every week,  but I digress.

Unfortunately, after a follow-up MR the great Dr. K wasn’t impressed by the results I was getting on Avonex, so he switched me to Tysabri. Tysabri had just been put back on market after being pulled due to Progressive Multifocal Leukoencephalopathy (PML from now on). PML is bad and you do not want it. It’s what killed a lot of AIDS patients in the 1980’s and 90’s My neurologist explained my odds at about 1:100-1:150 with my current JC virus titre level. He also explained to me that the longer you are on Tysabri the smaller the chance of developing PML, and he actually switched me from once every 30 days to once every 60 days dosing which he said allows some of the Tysabri to ‘wash out’ of your brain which should lessen the chance of developing PML. And I’m all for that.

So ultimately how am I doing? Great, given the circumstances. I’m lucky that my diagnosis came when it did, as the great Dr. K. does not put people on Tysabri any longer. And yes, I do have some MS issues, but they are relatively minor. The biggest being the spastic calf I have. It is always cramped up to some degree, for which the great Dr. K prescribed the a low-dose pill form of the drug Baclofen . It helps when it’s really spastic, but the nice part is shortly after my Tysabri infusions I typically can go without it for a while. I don’t have PML (that I know, at least) so I’m happy about that. I’m happy to be under the care of great MS specializing neurologist. I’m happy that MS didn’t wipe me out before it was discovered.  I’m happy about the fact that my wife discovered my MS by putting me on a test scan for a new MR machine at her hospital. My life could have been extremely different if I had not found out. And knowing is ALWAYS better.

 

And with that, I will close with this thought I have gleaned from MS. MS may take your abilities away from you, but it also bestows upon you a better understanding of those things that are truly important in this life and allows me to ignore the things that do not matter. This is the true gift that MS has given me.

 

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