20140620

Oh, and...

My recent neurologist appointment marks five years on Tysabri. Keep that ball rolling, it's been treating me so very well.

20140616

Deep contemplation

So it is after my six months of some serious soul searching, worry, and uncertainty I decided I was going to ask my doctor about staying on tysabri every eight weeks. Well, I had appointment with him today, and he said that some people who's MS was 'hot' did not fare well when they switched to tecfidera. He also noted that the rebound relapse for people of that type was especially rough.

This means I'm going to keep rolling the dice and stick it out with tysabri. It has been working for me so wonderfully well that I hate to have to switch from it. It's also hopeful when you also hear that there have been no PML reports (yet) in patients taking tysabri on an eight week schedule. Hopeful, but no guarntee. What really sold me was the risk put in comparison. The risk from PML comes down to ~1-in-200. The risk from stroke is 1-in-20 and the risk from cancer is 1-in-6. Doesn't seem so bad after all. Except those are life enders (for the most part), where as PML is life-as-you-knew it-the-day-before is over..if not just over.

20140612

This is health related, right?

A small victory
A small victory that puts me eight pounds away from my first goal of 220.

For the Imperial impaired, that's 103.4 Kg. I'm roughly 3.5 Kg from my first goal.

20140610

I often wonder

What my life with be like before I had MS. I'm not sure when the MS happened, nor can I ever be sure, but looking back I can see a lot of indicators through my life. If I had to guess, the affliction started in high school, sometime around junior year. That is when things started to fall apart. My marks in school were declining, but that could just be attributed to nearing the end of my high school career. There were days at football practice it was just a huge feat to make it through the day, which I did everyday of my career but one. I finally had to take a day off due to exhaustion. I faked a groin injury so that I could sit out a day of practice. Being trapped in shoulder pads and a helmet finally got to me. I had to take a break. I felt terrible about it too.

In fact, there are a lot of things in my life which made me feel terrible. I can now chalk them up to the MS. But imagine how I felt when I didn't even know what was MS. I constantly felt like I was somehow letting the laziness get to me. Well this thought was nice, but the kids can't let me complete a thought. Imagine that. A life with MS and kids who won't let you even think.

Seriously #FML, I'm going to listen to some NIN or RATM and self-loathe. That's about all the enjoyment I get out of this life anyway.

20140528

Sun In A Bottle

I've been taking vitamin D3 supplements under my neurologist's advice and whaddya know, I think its been helping. I've noticed a big boost to my happiness when I switched from the 2000 IU pills to 5000 IU. So in that light, I wanted to share this with all the MSers and non-MSers out there.

20140513

Farther from the Equator

The more likely you are in general to develop MS, and the more likely you are to consume alcohol.

20140428

Of All The Things MS Takes

It certainly does give one perspective.

"Nobody in my family had MS, nobody I know," said Harold, who has three older siblings. "It was a game changer in life. I'd been through a few things. I'm 43 years old. This was a major one. I began to appreciate my time here on this planet earth in ways I didn't think I would appreciate."


Well that sounds vaguely familiar...excepting the 43-year-old and older siblings part. "It was a major game changer in life"...nail on the head. "I'd been through a few things...This was a major one." Check. "I began to appreciate my time here on this planet earth in ways I didn't think I would appreciate." And there is the perspective of which I spoke. That is the one thing MS has given me, and probably many other MS suffers, I'm sure.

Are you asking, "WTF is Lemtrada AKA Campath?" Me too. Here's the wikipedia. It's Alemtuzumab...sounds a lot like Natilizumab (tysabri). I wonder if it will kill people in the same way?

"Here's the kicker," Harold (patient from above quote) said. "Within three weeks of the first dose, I felt great. I felt I had a new connection with life in a way I haven't felt since I was a kid. I felt like a baby growing up again. I guess MS was affecting me for a long time and I didn't know."

The emphasis is mine. Not that I'm terribly afflicted - BUT - I wish I had that feeling. I hope I'll find that feeling. I just want to run again.

Most importantly is this statement,

"It's been a life changer," said Harold. "I want the FDA to approve it as an option for people."

And FTA, "Lemtrada has been approved in Canada, Mexico, Europe and Brazil, but not the U.S."