Another Infusion Down

Got my infusion on Wednesday of this week.

It was great, one stick in the forearm and everything else was cake. Except when they removed the IV. I felt that a little more than usual. But I'll take the removal being worse over multiple sticks any day.

And now I am good until February of 2016. This low maintenance dosage of every two months is really been nice.

another infusion down


Is it possible

Nay, probable that because of my years of having MS that I have developed a downer attitude about this life? I'm seeing everything through pessimistic glasses.

I don't know. I'm so introverted and withdrawn, there isn't much on which to take measure. Perhaps it is a side effect of my pessimism, which (I hope, at least) would be a side effect of my MS.

It just feels like circular logic.


Yeah, I know.

The longer dosing interval is working great for me. Every eight weeks now. My neurologist recommended it when I said that Tysabri is working so well for me, I'd hate to go off it.

My take from the article is that every eight weeks is more effective and a lesser/no chance of PML. A win-win. Except for Biogen.

And you know what makes this study legit? The line at the bottom that said, "The current study had no commercial funding."


Ha Haaaaaaaaa

Oh, now I made myself sad : (

Best of luck with your lawsuit!


Candidate Clinton

Does your $250/mo limit on prescription drug costs include infusions received at hospital?

That would be awesome! Probably just another political move though.



I certainly hate being lumped in with the cancer patients for my infusion. I don't hate the cancer patients. I feel bad for them. At least they have hope of 'beating' their cancer. Alas, at this time, there is no known cure for MS. Which means I wouldn't have a cure for at least 10+ years. I prefer the medication be on the market for a long time. I'm already enough of a guinea pig with the Tysabri; it's working so very well though.

Anyways, back to being lumped in with the cancer patients.

It kind of sucks. The despair you can feel coming out of some of the infusion rooms. Death lingering in the hallways (but that could just be the whole hospital). On the plus side, the AIC staff probably think, "Oh good, we've got the MS guy who isn't looking bad at all* to treat for the next two-and-a-half hours." All why sitting there knowing I am DX:340. I know that it won't (shouldn't at least) kill me quick as a cancer. For that I am thankful. I am thankful there is a medication to halt/slow MS progression that is working (although in itself can maim/kill me). I am thankful that I have remained Relapse Remitting (RRMS). I am, OTOH, not thankful for: having invisible conditions, decreased mental and physical capacities no matter how slight. Needles, I freaking hate needles - bad disease to have if you hate needles. Dealing with people, I'm one of those just leave-me-alone guys. Having to deal with doctors, nurses, and even other patients just doesn't go along with me. But one endures. That is all I now know. You must proceed forward, no matter the outcome.

*And that's why they call it an invisible disease until you're fadged up. And I think the AIC staff knows better. And you see how all over the place this post was. My new reality.


I Had Two Month Infusion on Wednesday

This time was kind of miraculous.

I didn't feel the need for the tysabri fix for the two weeks proceeding my infusion. Golden!

And when it was time for my infusion, they got the needle in on one stick. Win!

Then I didn't get the lethargy typically accompanies my tysabri infusion. TOTAL VICTORY!



I'd like to know the etiology of my MS too, but I doubt we'll get that answer in our lifetime; it certainly shouldn't dissuade us from trying.

It's in an article about mitochondria and the role they may play in MS development.


Oh Yeah

I saw someone post a SK meme that they were on tysabri for 5 years and relapse free.

In typical Murican manner, I am going to one-up you.

(I was on avonex for the year before tysabri, with a 3 month wash out period)



Where the sick are seen as profitable (for the drug companies, at least)

Since introduction, the two MS drugs I've been on have seen their rates skyrocket.

the first drug I used, Avonex, has increased 381% since it's introduction.

The drug which I am now on, Tysabri, has increased by 101.5%.

Damn, it's a good thing I have good insurance...and my wife works at a hospital! Of course, that is how I found my MS.

And if these greedy drug companies weren't so profit driven, this wouldn't be a problem; but in Murica! it's all about how much you can make. And this is why Capitalism will be replaced and Murica! will be ousted as the World Reserve Currency eventually.

My favorite quotes of the article:
"Every time a new drug came onto the market, the price of all the drugs jumped"
"The standard economic principle that more choices will drive down prices doesn't always apply in the topsy-turvy world of drug economics, especially in the United States." (Emphasis mine]

Something is not right here.



Last night I was going to the bathrooom to take a leak. When I was standing there, I felt like I was going to pass-out; however, I had just started urinating after a very challenging start. Having accomplished starting going, I certainly didn't want to stop. I figured I could complete the stream and then lay down.


I regained consciousness after I was sitting on my ass with my back against the wall.

Holy shyte.

Note to self, If I feel the urge to pass out, immediately lay down.

Don't complete the stream, don't think about trying to put it off. LAY THE FSCK DOWN!

Worst part of it all isn't that I passed out, but my ass hurts...really bad. I must've landed on the corner where the tile meets the floor. I'm in pain here, but I didn't want to take any pain management for fear of something being wrong. I won't be able to until tonight after the kids go to bed.

Oh, did I mention what I think caused it? I found a dent in the roof of my 15 day old 2015 Explorer. Gdmfsob! It'll have to go to paintless dent repair, as I don't want it to go to the body shop and get bondo. It's driving me nuts. I hate the person who ruined my new car feeling and caused me so much distress that I end up falling over in the bathroom?

Thank you for ruining the new car. I KNOW WHO DID IT!


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!


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.


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.


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.


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.


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?


“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.