Tainted Kernel

Hey Illinois Legislators

noreply@blogger.com (Michael) — Wed, 16 May 2012 12:42:00 +0000

Study shows Marijuana May Ease Multiple Sclerosis Symptoms

It most certainly does, I can personally verify this.

And yet my legislators chose to remain ignorant and under the stigma of old to keep me suffering! Thank you Illinois representatives that choose to make me a criminal for treating my Mulitple Sclerosis symptoms!

My lawmakers no longer represent me! In fact, now that I think about it, they never have!

todays infusion

noreply@blogger.com (Michael) — Tue, 15 May 2012 01:59:00 +0000

went damn well, just waiting out the watch period!

I accidentally put this into drafts, posting now to bring it to light!

It kinda blows!

noreply@blogger.com (Michael) — Sun, 13 May 2012 13:23:00 +0000

To realize the medication you are taking to alleviate the serious f*cking neurodegenarative disease is just a money making opportunity for some investor douchebags who couldn't care less about the disease from which I suffer.

That right there is what is wrong with America today.

HOLY SH*T

noreply@blogger.com (Michael) — Sun, 29 Apr 2012 14:30:00 +0000

Why didn't anyone tell me petting horses was the way to combat MS?

QUACKERY!

Petting horses doesn't slow down your MS progression. It doesn't cause happiness in your myelin sheath to protect your nerves, or prevent the passing of your blood-brain-barrier by white blood cells. Hell, diet and exercise are only thought to help, they aren't proven!

From the Tysabri info page:

"Do MS diets work?

Many different MS diets claim to treat, or even cure, multiple sclerosis symptoms. Most haven't been rigorously tested in controlled studies. The few that have been tested have produced mixed results."

What a Crappy Choice!

noreply@blogger.com (Michael) — Thu, 19 Apr 2012 16:14:00 +0000

I need a MS medication that kicks ass without the risk of PML!

As-of now my choices are:
1.) Suffer the debilitating fate of MS without treatment. I do not very much like this option.

2.) Treat my MS progressions, which Tysabri is what is being currently used to delay progression, and it's doing a damn good job! However, the constant reminder that PML may be waiting for me around every corner is a real ****ing downer. Especially when you get email like the one I linked in the previous sentence. FMITGA is all I can say. No rest for the wicked (auto-immune diseases).

So I choose to not suffer the ravages of MS, and to treat it. Here's to hoping the JC virus won't get me!?! I need to talk to my neuro to see if taking a break is a good idea again.

And modern science is not so comforting, FTLA: "TYSABRI is thought to inhibit white blood cells from getting into the brain and attacking nerves. Keeping these cells from attacking nerves is believed to result in fewer brain lesions** that cause multiple sclerosis symptoms." (Emphasis mine)
They only think they know how it works, they don't know exactly...FMITGA...that means there are a lot of things Tysabri could be doing that we aren't aware.

I sincerely hope I can make it to until at least the age of 40...

Hope...not so quick!

noreply@blogger.com (Michael) — Sun, 15 Apr 2012 14:49:00 +0000

A patient who was previously being treated with Tysabri (Natilizumab) for their MS, and then switched to Gilenya (fingolimod) (The pill!) has contracted PML.

Fuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu!

I am now on Tysabri, and was hoping I could switch to gilenya as I fricken hate needles with a passion (but have become a lot more used to them being stucky* every 28 days for the last 2.5 years, thanks to the fantastic AIC crew @ NCH!), but switching medications seems to be a PML trigger, and since I'm seeing such great results on tysabri (haven't had a relapse since treatment started) and the pill will be ~ as much $ as tysabri, I don't see myself switching medications. Plus I get to pick out my own lunch when I'm being infused nowadays!

Here is the first paragraph warning from NIH on Tysabri (emphasis mine):

"Receiving natalizumab injection alone or with other medications that affect the immune system may increase the risk that you will develop progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability). The more doses of natalizumab injection you receive, the greater the risk that you will develop PML."

This contradicts what my neurologist said, so I'll have to bring that up with him...damned if you do...damned way more if you don't. Here is to hoping my immune system is so amped up that an immunomodulator won't open up the door for PML! So I suppose hope will have to continue to carry me.

Oh, and if you're unlucky enough to be diagnosed with MS, and lucky enough to be insured and treated with medications that delay progression, and then unlucky enough to contract PML, but lucky enough to catch it before your life ends, you also have to watch out for IRIS:

"If your treatment with natalizumab injection is stopped because you have PML, you may develop another condition called immune reconstitution inflammatory syndrome (IRIS; swelling and worsening of symptoms that may occur as the immune system begins to work again after certain medications that affect it are started or stopped), especially if you receive a treatment to remove natalizumab from your blood more quickly. Your doctor will watch you carefully for signs of IRIS and will treat these symptoms if they occur." Also from the above linked NIH page.

Really:Fuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu!

What is PML you ask, aside from answering RTFA, the wikipedia page says, "PML is similar to another demyelinating disease, multiple sclerosis, but progresses much more quickly."

Hippocratic Oath Hypocrisy

noreply@blogger.com (Michael) — Sat, 24 Mar 2012 20:25:00 +0000

Someon You Know Has MS

noreply@blogger.com (Michael) — Fri, 16 Mar 2012 21:01:00 +0000

It's MS awareness week

noreply@blogger.com (Michael) — Tue, 13 Mar 2012 15:02:00 +0000

Kicked off yesterday (12 March). Here is a fun fact from the newsletter I received today:

"Did you know that the average cost of someone living with MS in America is $69,000? The median household income is only $49,000."

You can read that as, "If you don't have insurance whilst receiving an MS diagnosis, you're fscked!"

Almost forgot

noreply@blogger.com (Michael) — Sat, 10 Mar 2012 04:57:00 +0000

Now that that is out of the way, I have to note that something happened which has never occurred in past infusions: I was tired. So tired! Probably ~2.5-3 hours after the infusion I just hit the wall. It didn't go away after a night's sleep either. I got up the day after being infused, went about my normal daily activities, and around mid-day I hit the wall...again. Was able to make it through the rest of the day, but it was tough. A fatigue like no other. The thing to note here is this is the one and only time this has happened. Side effect for some reason? I don't know.

What does MS look like?

noreply@blogger.com (Michael) — Sun, 26 Feb 2012 17:10:00 +0000

First, I have to show you my brain! See the spots? That is how MS looks!

One of the worst things

noreply@blogger.com (Michael) — Mon, 20 Feb 2012 21:04:00 +0000

about my ms is the fact that I am routinely having awesome thoughts and ideas, but i rarely remember them long enough to write them down. a vast majority of the things i think never have a chance to get started : / it is indeed most infuriating!

Good news!

noreply@blogger.com (Michael) — Mon, 06 Feb 2012 18:42:00 +0000

I haven't had any futher progression of my MS, thanks to the kick arse drug Tysabri. Thank you Biogen Idec! I hope your rewards are as fruitful as they are reported! But good news! I may be off injectable/infusion drugs atound 4th quarter of this year. Biogen's new drug, which at this time is named BG-12, is a pill form that may be able to provide results similar to tysabri, but without the PML risk! Oh yea! No needles, No PML risk. I'm sold. I hope it works out. As an added bonus he mentioned that the drug has been used for around two decades in Europe for a psoriasis drug, I believe. That means it has effectively been through the rigors of drug testing. And when I say I'm fearful of new drugs that haven't been tested thoroughly, I mean it. Tysabri is fairly scary with the PML risk, but is yielding impressive results, so I don't want to stop it unless the next drug has undergone the usual battery of drug trials and time. It's the best time to have Multiple Sclerosis in the history of Earth!

Extending my opinion

noreply@blogger.com (Michael) — Wed, 01 Feb 2012 16:34:00 +0000

As this is the blog I've devoted to my Multiple Sclerosis, I've decided to take it upon myself to make mention of what a dumb ****ing idiot Newt Gingrich is. How he could ever hope to have presidential aspirations is beyond me, but his arrogant ass is somehow able to fool himself into thinking his record is clean enough to do so. Politics aside, there is one reason I will do everything in my power to make sure Gingrich does not get the republican nomination: Newt Gingrich left his second wife after she was diagnosed with Multiple Sclerosis (and he bailed on his first after she developed cancer). As a person with MS I take great offense to this. It shows that when the going gets tough, you bail. That right there is reason enough to keep you from the republican nomintation. Newt Gingrich bails when the going gets tough. My wife is more capable of running this country than you!

Corporate <3

noreply@blogger.com (Michael) — Sun, 22 Jan 2012 16:14:00 +0000

If you know me, you know I am not a big fan of corporations of their money grubbing tactics. Especially Global Corporations! Yet I realize they are sometimes a necessity. So I present to you the most important corporation in America! Biogen Idec (From my view, at least, as a MS sufferer) If it weren't for you, I don't know that we would have treatments for MS. And because of your development of drugs for MS, the growth of MS drugs is growing exponentially! First there was Avonex, along with came a whole slew of alternate options once it lost its orphan drug status. Avonex didn't work too well for me, so my neurologist put me on a different Biogen product, Tysabri, which I am still using to this day with great effect! It has effectively stopped the MS progression, which I gather from what I was told by aforementioned neurologist. Ah, Biogen. I know what you are after is the almighty dollar (and a slew of world currencies), and creating such a unique and new drug to combat MS is a good way to go, with your nearly $5B in operating revenue!

This is what scares me

noreply@blogger.com (Michael) — Sun, 22 Jan 2012 05:30:00 +0000

The uncertainty of MS

Click picture to link to page

Look at that page and tell me you wouldn't consider MS scary. Now, am I safe because of the Tysabri, which has PML risks?* Hopefully the Tysabri will prevent any further damage from MS, and I'm lucky to have been diagnosed and treating it so early. Thanks to my loving wife the MR tech!

And yes, in the Stratify study I was found to have the JC virus antibody, which means I have been previously exposed to the pathogen.** *I'm past the mean average of treatment time where PML risk is highest, according to my neurologist, but that is no guarantee. **Yes, they offer(ed) testing for the drug which I am on to see what percentage of people using it have been exposed to the JC virus. Ahhhh, the life of insecurity in a very secure life.

I can see clearly now

noreply@blogger.com (Michael) — Thu, 05 Jan 2012 00:12:00 +0000

Today my family and I went to the optometrists. Shelby got a new pair of glasses and I got a new pair of glasses and I'm going to try contacts.

Infusion so good

noreply@blogger.com (Michael) — Fri, 23 Dec 2011 17:49:00 +0000

I forgot to post about it. I was back to my usual AIC nurse, Michele. And although she is a Packer's fan, she is the nicest one I know, and she is champ at getting me in one needle stick! Sweating hands and all...you want to see a physiological reaction to trypanophobia, come visit me on infusion day prior to injection! Not that everyone else there is bad, it's just that my veins run & hide due to the anxiety that sets in due to needles. I frickin' hate them! And I picked the wrong chronic disease for hating needles. Oh wait...I didn't have one iota of choice in the matter : /

TL: Xmas tree!

noreply@blogger.com (Michael) — Mon, 28 Nov 2011 19:21:00 +0000

x-post from MjNet.

From yesterdays infusion

noreply@blogger.com (Michael) — Thu, 20 Oct 2011 17:03:00 +0000

A needle in my right AC vein

But I have to give a big thank you to Jayne at the AIC, the brilliant woman waited until I was done with my treatment to take my BP, and it was...wait for it...137/71!!! My BP is within normal range! Frickin' brilliant Jayne! You will never know how much you've done for me!

Damn vampires!

noreply@blogger.com (Michael) — Fri, 14 Oct 2011 19:59:00 +0000

I thought the coast was clear for this appointment, but then my neurologist asked me about the Stratify study. Bahhh! Blood draw!!! At least it was for the furthering of Multiple Sclerosis research. Everything was nominal otherwise. He was, as expected, pleased with the effectiveness of the Tysabri (Natilzumab) treatment. Then he mentioned a pill called BG-12. A pill!!! It's only in phase III trials ATM, but its A PILL that shows progress! I can't wait for that to be available, as long as it is at least as effective as Tysabri.

The Neurologist...again

noreply@blogger.com (Michael) — Wed, 12 Oct 2011 17:41:00 +0000

I've got another appointment with my neurologist on Friday. I'm sure it'll be just another how ya doin'...ok? good! type appointments, with which I am fine. I'm not sure Ill not have much about which to talk, as usual. That seems to be what MS has taken from me most....my sociability *sigh*. That and I have a hard time remembering things. At least it's been somewhat forgiving!

Infushin masheen

noreply@blogger.com (Michael) — Wed, 28 Sep 2011 16:33:00 +0000

Just thought I'd share what the IV machines/poles that I have to see for ~two hours every four weeks.

The AIC can be a depressor

noreply@blogger.com (Michael) — Thu, 22 Sep 2011 19:04:00 +0000

I get infused every 28 days, which is fine. The real issue I have is being included with all the sick & elderly that are near death. I feel bad for them, but it is a near monthly reminder that death is coming for each and every one of us. Depressing!

Awww yeah

noreply@blogger.com (Michael) — Tue, 20 Sep 2011 15:21:00 +0000

The fight for a free Illinois is back on! State representative Lou Lang and former state's attorney Senator William Haine, you deserve a big thank you from the people of illinois!

Here is the text of the postcard which they want distributed: Dear Legislator: Seventeen states and the District of Columbia have laws in place to allow seriously ill individuals suffering from debilitating illnesses to alleviate their symptoms through the use of medical cannabis. Under Illinois law, however, patients with HIV/AIDS, cancer, or multiple sclerosis who use medical cannabis are subject to arrest and possible jail time, even if their doctors recommend it. You can put an end to this cruel practice by supporting the Compassionate Use of Medical Cannabis Pilot Program Act sponsored by Rep. Lou Lang and former state’s attorney Sen. William Haine.

Beautiful, non-partisan, purely fact-based. How could you not support legalized medical cannabis for those of us suffering from one of the above mentioned diseases.
Edit: Holy crap, the blink tag still works in mozilla browsers! For those of you still unfortunate enough to still be using IE are not able to see the multiple sclerosis tag blinking. Use firefox!