20121229

Yearly MRI...Done

Had my yearly MRI last night. Went well, even with the needlestick. The tech was very proficient in this matter.

Just got the results reported to me, "Stable, no new or enhancing lesions." Which is fantastic news. The wonder drug Tysabri is working so very well for me.

I'll be posting my next infusion picture on the ninth of January...which is next year!

20121212

the last infusion of the year

Another infusion down, went very well today. only one needlestick  as opposed to the four last month.

20121027

Neuro Appt

Another neurologist appointment, and everything is fantastic news. My treatment, Tysabri, is doing its job perfectly. My MRI looks stable. I've only had one major episode, from which the effects mostly wained. The other major episode, a bout of optic neuritis, was alarming but went away after a bit of time and StErOiDs (I wish those on nobody).

I'm as lucky as I am unfortunate. I have Multiple Sclerosis, which sucks balls, but it has barely affected my life. The convenience of modern designer drugs, no? And major health insurance! Thanks to my parents for imparting that bit of wisdom. And my loving wife for providing it!

But it still looms over my head. Its not as in-your-face as when the weekly shots in the leg were administered by my loving wife. But, as I said, it still looms. That the next day I wake up my life could be significantly changed for the worse.

I try not to worry about such things, but it is damn near impossible when you've got an at-least monthly intravenous infusion reminder of what is being controlled in my body. If it isn't damn near everyday (or truthfully bedtime, when the mind has time to wander) that I have to face the reality with which I may be presented. I'm worried that Everyday may be my last. Not that I am worried about dying - I am, who isn't, but off-topic - I'm worried about having to face a life worse than death. Me - who I am - would be mostly gone. And again, I have to tell myself, "just try not to worry about it."

Here is to modern science people! And luck. A little luck never hurt anybody, right?

SIDE NOTE: I've learned the (layman's) secret to Tysabri (Natilizumab) - it basically tells your immune system to not enter the brain. Which my loving wife followed up with later, and it makes damn good sense, why PML risk is increased: because your immune system is kicked out of your brain.

C'mon BBB!


A Personal Victory

If i may brag a bit about a goal I finally bested. It may seem trivial to you, but to me it's a major milestone: I weighed in under 250 lbs!

20121017

another infusion down

another easy infusion. Single stick. Early seating. Excellent service. Well Played AIC.

20121014

Your husband is going to lose

the race for the president, and you're off petting horses.

I can guarantee one thing. Petting horses isn't a FDA approved therapy.

And Mormonism isn't a proper religion. It's a cult...even though Billy Gahram would now disagree.

It's reassuring

To see every article coming across on a google alert for 'Tysbri' (the drug I take for my MS) to be a result of some financial institution on the success of the financial performance of Tysabri. Here are the top three:

(1.) (2.) (3.)

I'm here to tell you it's working fine, and my insurance gets billed ~$7500/28 days.

I'm glad all you sick f***ers are getting rich off the solution to my problem.

And we wonder why there will never be a cure?

20121009

Listen, CCSVI is not for me.

I've posted before about CCSVI and how I would have to see a lot of SCIENTIFIC EVIDENCE to prove it is effective.

So far the evidence does not back it up like I would need to see to allow someone to go rooting around major vessels IN MY BRAIN (yes, technically in the neck, but close enough).

What? You spent a bunch of money on a lab to provide CCSVI. Why didn't you wait for the science to come in? Dumb dumb dumb!

Moreover, I don't need you idiots spamming my blog about MY MS because you made a poor decision in this life and now need more ignorant customers to allow you to root around major brain vessels.

No matter how much you SPAM me, I am not getting it done at your clinic. If the science comes in proving it the most effective cure for MS, I will compline a list of those who spammed me and publish it so that MSers know that they should not patronize those fly-by-night clinics who SPAM.

People with MS are generally intelligent people and won't fall for your BS.

Plus, I am either a 0 or .5 on the EDSS. So there is absolutely NO NEED FOR ME TO HAVE MY BRAIN (Neck) VEINS CLEARED.

20120919

Oh I am (not anymore) pissed off

Every year at this same time; I have the same problem at NCH AIC:

The AIC again doesn't have the required legalese (paperwork to Cover their @$$) to perform my infusion. It went something like this

1st year: Didn't know I needed a Physical every year. Infusion delayed by three weeks
2nd year: Things went pretty well, but required scrambling on a hunt for information. Infusion performed on time.
3rd year: Things didn't get sent to the proper people. Infusion delayed by a week.

WTF?^^ I know my neurologist said something along the lines of there will be a lot of hoops through which you'll need to jump, but GD, c'mon! Three years running! This shit is a little too repetitive for me. I'm not sure if it's the doctor's office fault for not sending the order preemptively to NCH or NCH AIC for not requesting the information they needed until the night before/one-hour before my appointment. I am sick of this. I suffer from Multiple Sclerosis. I do not need this agonizing worry place upon my head.

I'm dropping the hammer. Someone is going to get burned because of this. I'll be contacting the patient Advocate at patientadvocate@nch.org. Their wanting to CYA is affecting my treatment of my MS. This is unacceptable and will no longer be allowed to go on!

===

And that is why you should wait before posting! After a bunch of calling around and prodding people, they got the order through and my infusion was performed, albeit later than expected, which almost made my wife late(r) for work. Thats why you should always wait before taking big action on things!

20120909

My Google Alert

That I use to keep up on PML news is "Multiple Sclerosis + PML".

Do you know what I see most often in that weekly email? News about Pakistan's foriegn relations moves.

Totally irrelevant El Goog. You're better than this Google. I fear the temptation of larger profits has distracted you from your work.

20120831

Did I post about my most recent infusion?

It was nothing but typical...which is a very good thing.

Bozena was an ace as always; taking her only one needle stick to breach the vein in my hand. I love that woman! If I get a infusion survey, and I remember, it will be going back to the hospital with the highest marks for her! If you have to use the services of Northwest Community Hospital Ambulatory Infusion Center, seek out Bozena! Seriously, you will not regret that decision.

I've become rather accustomed to them now, and am better about needles. I remember my first trip there and all I can say is sorry Michelle. I'm not perfect by any means, as I still tend to sweat profusely upon impending needle stick. It sure is weird to feel a needle moving around under your skin. I still squirm at the thought.

And, as has been the case since medication, I've no new noticeable symptoms. Now when was on Avonex, I still had some MS activity as detected by an MR scan. Since switching to Tysabri, all has been extremely well. No new detectable activity. If only there wasn't that PML risk, it'd be the perfect drug!

20120827

20120817

New Study Shows

Vitamin D plays an important role in Multiple Sclerosis.

My doctor (GP) heavily emphasized vitamin D3 at my last physical.

20120715

Ya Know, Maybe I Wasn't Lazy

That's another thing about MS, you constantly ponder over what if's, and my what if for today is what if I realized that I wasn't sleeping until noon (or later) every day back in my 20's because of laziness (the record for me is 5p). I mean, I (or someone) should've or could've noticed that I was sleeping so late EVERY FREAKING DAY OF MY LIFE and correlated the problem.

Not that there would have been much difference, except for me likely graduating from university. And perhaps receiving my diagnosis a few years early. Though I do have to note that I happened upon my MS by accident, and didn't realize it was going on. OMG my life may have been dramatically modified by this disease and I'm not even aware!

20120627

Another infusion sails by

Had my infusion today. It went as expected, except it took two needles sticks : ( Seems like the one v me is getting tired of thein in which they typically stick

Another Typical Infusion

Today's infusion was another typical one. Nothing major to report, except for the vein in the left hand that the infusion nurses typically use is starting to refuse being the main conduit for the infusion of Tysabri, thereby causing them IV to go in my right hand.

Other than that, I was a bit later so I didn't get to pick out my own lunch so I didn't have a huge tray of hospital food on which to gorge.

I didn't bother with a picture of the IV this time. Sorry : /

20120609

What if

My disowning was due to my MS? These are the crazy questions you ask yourself when there isn't an answer. The good part...I'm over it. If others want to burn bridges, let them. I don't need to cross them anymore! And if it was indeed due to my MS, we don't need to talk anymore anyway!

Legit Comments

That I've allowed to be be posted, thank you all for your contributions. However, I seem to be having issues posting replies to comments. For this I apologize, and if you like to leave your email in your comments, I can provide direct responses. I'm sorry if your comments seem like they are being ignored.

20120606

Had to miss my wednesday infusion

On account of my wife going into labor. I won't go into any more detail than she did wonderfully amazing in delivering my son Korben Michael Johnston, for which I am eternally grateful. You did a fantastically wonderful job! You're amazing Shelby!

And of course, I had my infusion the next day, which was without a doubt the shortest commute I've ever taken to my infusion!

20120516

Hey Illinois Legislators

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!

20120514

todays infusion

went damn well, just waiting out the watch period!




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

20120513

It kinda blows!

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.

share holders :\

20120429

HOLY SH*T

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."

20120419

What a Crappy Choice!

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...

20120415

Hope...not so quick!

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."

20120324

20120316

20120313

It's MS awareness week

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!"

20120309

Almost forgot

march infusion
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.

20120226

What does MS look like?

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

20120220

One of the worst things

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!

20120206

Good news!

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!

20120201

Extending my opinion

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!

20120122

Corporate <3

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!

20120121

This is what scares me

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.

20120104

I can see clearly now

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.