20150428

Though I'm not part of the study

I am on extended dosing, and the results are GOOD! There have yet to be any incidents of PML in the extended dosing group!

20150426

The Attack That Changed Me

Ah yes, memories. Of the horrible, nightmarish sort. The kind you want to forget...but you never will.

I'm talking about one of my few episodes of Multiple sclerosis. Its all sort-of fuzzy at this point, as it was certainly not an easy time. I remember having two major episodes before I started a DMT. One of which messed up my vision pretty horribly. I remember trying to go to work, and when I was backing up my nissan pickup, I backed into the wall of the house. Turned my truck off and had my wife drive me to work. I ended up powering through that episode only to have the next one affect me in ways I couldn't fathom. It, my last attack, had changed who I am at the very basic levels of being human. It took from me the ability to make small talk. The basic banter between two people. The kind of talk that doesn't matter, but fills the silent pauses between two people. You don't realize how much small talk squelches those periods of silence until you can't do it anymore. Now my life is filled with awkward silences. I'm getting used to it, but I doubt everyone else has. I like to think I'm fairly adept at hiding my shortcomings. Sort-of tucking them under the rug.

No matter, where was I. Perhaps I was talking about my lack-of-concentration or focus, or I'm not even sure what to call it. I'm starting to feel like a burn-out. I can't hold onto my thoughts anymore. I'll remember I have to get something from the garage and when I walk into the garage I forgot what specific item for which I've gone into the garage. This isn't fun, and I'm getting sick of it. I have yet to find any memory or brain-aid to help with this problem from which I suffer. I don't foresee it getting any better either. This is my new normal. And just like the rest of you, it is ending one day at a time. As long as I don't come down with PML.

But lets end this pity-party on a good note. I'm still up and walking around unassisted. I'm riding my bicycle further and faster than I ever imagined. I'm (at least like to think) still above the mason-dixon line of intelligence. I have two children of which I am still able to care. I have a wife that cares for me and loves me. I am still self-able, for the most part.

20150322

Why is tysabri so scary?

PML and the withdrawl are just the surface.

Here is a partial list from MS-UK

Yes, it is working that well for me.

20150303

I'm glad...for now

That I haven't left the tysabri which has treated me so well, but does carry a PML risk. What with all these (two) fingolimod patients turning up with PML.

20150214

I subscribe

To the school of thought that you need to bring you fight to your enemy. Then I saw this quote on shift.ms,

"Keep fighting your MS with strong therapy- the MS will be ‘fighting’ your brain everyday- whether you chose to treat it or not…"

So very true. And that's why I'm on the tysabri, which I can never get off, as I am scared to death of the so-called 'rebound relapse'. I don't want to go up on the EDSS.

20150202

Good News Everyone!

MS research is getting some major corporate backing. (Spoiler: El Goog!)

So every time I do a web search of check my email, I'm supporting an end to MS?

FTA:

“We used to see patients at the beginning stages of MS -- two women would come in with optic neuritis, they couldn’t see out of one eye, they’d have some spots on the MRI scan, and they looked very similar,” said Rudick, who previously was director of the Cleveland Clinic’s MS program. “But as we followed them along, 10 years later, one would be a championship tennis player still and one would be in a nursing home. I never understood that.”

Ya'll Some Tasteless Idiots

Watching the bachelor to raise money for your 'charitable' organization.

So what'll be next? A WWF...errr...WWE viewing party?

Dumb drivel watching automatons.

You mind becomes free shortly (or a while longer) after an MS diagnosis. Having that and then giving it up is so very ignorant.