20141222

He who laughs last

Video games ARE good for me. Bite it 1980s mentality!

20141216

FDA's communication for the pill

No. Not that pill, the MS pill.

Making it official. Tecfidera carries with it a risk of PML.

I am glad at this point that I did not switch of Tysabri. Though, I think it's every eight week dosing is lessening it protection to the point that I am getting very gradually worse. I notice that my leg pain has been increasing as of late. Hopefully it's a perception thing. I talk to my neuro in June about it, and perhaps I need to be switched to every six weeks? At least if the effects are reduced, I should be receiving immune system protection from the cause of PML, the JC virus. Of course, I came to this conclusion the evening after my six-month neurologist appointment. Sometimes I'm just so stupid!

20141209

Think Its Hard Sleeping With MS?

Then take the fact that I am JC virus positive

JCV+

And a good nights rest is way father than an arms reach away. I haven't had a good nights sleep in...I don't even know anymore.

Edit: I just realized my title is a double entendre, which was completely unintended.

20141202

My Brain

Is draped over McCormick Place for thousands to see at the RSNA 100th anniversary conference. Hopefully someone will take a picture for me!

20141027

A bit o brilliance?

Ebola is a virus. Interferon is an antiviral of sorts. Wouldn't it be logical to give Ebola sufferers interferon to help them hopefully make it through thee rages of Ebola?

20140929

Sticking it out

There is a new drug coming out that works similarly to Gilenya: RPC1063. It works by 'modulating the sphingosine-1-phosphate (S1P) receptor, which controls the autoimmune reaction in the lymph nodes'.

Ok, a little above me. All I know is the Tysabri is rocking for me, even on an eight-week dose schedule. I'm going to hold on to that drug as there is a 'rebound effect'...I'm pretty scared of that. So I'm stuck on a kick-butt drug. Could be worse, but hopefully the eight-week schedule will keep the PML away.

20140923

Hey Bruce Rauner

Why do you hate me? Why do you not want me to be able to treat my disease.

You disgust me. I certainly would not cast a vote for you before, and this just solidifies my opinion. And it'll cause me to tell others that douchebag who can't think outside the box is merely a puppet to the republofascist machine.

You're a tool Rauner. I hope your campaign decays in the ashes of your burned out candidacy.

20140910

Great, just great

Benzos lead to Alzheimer too. Good thing I only use them once every two months.

That and the slow walking...guh. Not much hope for me. But then there never was.

20140829

HOPE

Hope that my memory can be fixed with a zap of electromagnetism. Although the article did say healthy people, which since 2007 I can no longer consider myself.

20140818

Kenzie Kindergarten

We sent Kenzie off the Kindergarten today. I posted about it on my Mj site.

20140811

Marching on...very slowly.

On Friday, the Illinois department of public health publicized it's application for medicinal cannabis ID cards for qualifying patients. (Links to a PDF form)

I'd like to point out

Shortly after diagnosis I asked my neuro if acquiring HIV would stop MS. Theoretically, of course.

Now this comes across the wire.

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."


20140407

Well That's Reassuring

Scientists think they've found out how the MS drug tecfidera (Dimethyl Fumerate [DMF]) works.

Clue: Genetic Failure! I don't have the gene for HCA2 - or at least I assume based on the linked article.

20140401

Bad Odds

When I read such information, I am happy to be getting off Tysabri.

Should be my second-to-last infusion on the two month schedule.

20140330

Hopefully My Last Infusion

This is still speculation at this point, but I believe I will have my last Tysabri infusion this Wednesday. Which is good and bad. Bad because I've been doing so well with ZERO relapses since starting it. Good because I loathe needles and there is (and pretty much always been) a 1-in-118 chance that I will develop PML due to my Tysabri treatment, and you do not want that! Those odds are a bit too risky for me!

I am at the point where I will soon see if my life will continue as normal or a new (sub)standard will be applied. I've enjoyed my life this far, even with the MS diagnosis; let's hope it stays that way! Only time will tell how my MS responds to my new medication.

Wish me luck.


UPDATE 07 MAY:
Yeah, I don't know if I posted this early in the morning or what, but clearly that wasn't my last infusion.

20140321

Barts and The London

Has bad news for me.

NO TREATMENT FOR MS-related memory problems, went the headline of the article.

Guh, now I've got to hope some scientist comes up with a fix for Memory Symptoms...errr...Multiple Sclerosis.

Now I have no hope that my wife will stop blaming something I use to treat my MS for my memory problems, instead of the MS itself. NO HOPE! DAMN YOU MS!

This was the chart my neuro showed me, or at least something very similar. My number 1 in 118, which is why I am switching to Techfidera.

20140218

Downtime...Fixed

You may have realized that TK has been down for a few days. It was expiring at my old registrar and took longer than usual to move over to the new registrat. I'll have to act sooner should I transfer any more domains!

My apologies to my loyal readers. I suppose I could always chock it up to having a MS brain.

20140208

Freaking vampire doctors

My GP wanted a routine blood test. I had to fast last night and go to the hospital without any coffee this morning. The blood draw was relatively painless though, and it's a lot less worse than getting an IV put in.

#NotMSRelated

20140205

Expectations

As I conclude what I think is my second to last tysabri infusion, I realize I'm going to see the NCH AIC staff a lot less :( they've basically become part of my family. Unfortunately, I'll probably have to see them again when I have my 'rebound relapse' from coming off of Tysabri. Looking forward to that : (

20140203

IRIS : (

If PML isn't bad enough, the cure can end you too due to Immune reconstitution inflammatory syndrome

As good as Tysabri has treated me, I'm scared and I can't wait to get off this stuff.

#FMITGA

20140120

GDMFSOB

You've got MS. Enjoy!

Oh wait...your chances of getting cancer are now through the roof too.

Sometimes the fight just doesn't seem worth it; I feel sometimes that it would be most appropriate to just check into a nursing home and die.

But no, I can never stop fighting MS. MS is a condition, it is not what will kill me!

20140117

The Woes of an MS Sufferer

MS is really messing with my memory. I have a serious case of the can't remember sh*t! And it's driving me the nuck futz!

Today, when I dropped off my daughter at preschool, I remember I forgot to bring something that starts with an A or B.

GFDI, I really hate my life and useless memory sometimes. #FML

20140115

It's the little things

to which I'm paying attention now. Like when I'm going to pick up my daughter from pre-school. I won't use the self-opening handicapped door which lazy people use to avoid any physical exertion! Nope, I'm going to open my own doors while I still can. I'll use the self opening when I no longer can open the doors on my own.

This is the perfect summing up of the 'Merican condition. Too damned lazy to do anything on your own!

20140101

Happy Friggin New Year

I'm looking at a medication change this year, if you haven't been following. My neuro has me freaked by saying that there is a rebound effect from coming off Tysabri. And my children, as always, don't let me get anything done. More of the same fun.