20101216

Best infusion ever

Big thanks to Michelle at the AIC@NCH! Had one needlestick today, which I could barely even tell what was happening. It was such a marvelous time, Michelle even ordered me a lunch with two main courses! What a champ, even if she is a Green Bay fan! Thx for the excellent infusion!

20101119

Another easy infusion

So my last two infusions went surprisingly well. Both were single needlesticks. Woohoo. In the hand, which kind of sucks, but as long as its a single needlestick I'm fine with that. Even with Michele, the Packers fan! Gotta love those people who can see beyond their football allegiances..I sure can't. Thanks Michele!

20101001

Damn, the MS pill is going to cost a lot!

While the ABC's of treating MS costs $2800-3200/month, Gilenya is expected to cost $48K/year. It is cheaper than Tysabri though (13/per year, ~$5500/mo. = $71,500 : (

20100929

Stomp the house!

The U.S. house passed HB 1362. Now onto the senate. I'm not sure if I like the idea of being tracked. I'm not very familiar with the law, but I'd think having a collective agency monitoring trends of MS/Parkinson's definitely would be a good thing. Information is power. Hopefully it'll be wielded properly.

And the title is in reference to a Fresh Beats episode. My daughter loves them!

20100922

Dissapointed on infusion day

So I had quite a shock at my infusion today. The AIC nurse who never misses missed. I was absolutely surprised at that. I'll have to refer to her as the AIC nurse who missed once, only once. She only had to stick me one more time in the wrist : ( but it definitely could be worse. Even the best sometimes miss! I can't fault her though. My veins were all sorts of stickable when I went to bed last night. When I got into the hospital, they just all receded as far as they could. I was astonished! My wife calls it white coat syndrome.



Infusion 2010.09.22

20100920

Two whole weeks

I'm at the point of not smoking for over two weeks. Wow! I'm very determined in this effort and am finding it easier than I expected. Yea me! The worst part, I've got my first infusion without smoking this coming Wednesday.

20100914

Over a week

Its been over a week (monday marked a week) since I quit smoking. I'm happier because of it, and really think this is the time I'll be ending it. I've felt more dedicated to the cause than ever.

20100913

Rx Mary Jane

From the mouth (or hand) of Dr. Andrew Weil

FTA:
"Research into possible medical uses of Cannabis is enjoying a renaissance. In recent years, studies have shown potential for treating nausea, vomiting, premenstrual syndrome, insomnia, migraines, multiple sclerosis, spinal cord injuries, alcohol abuse, collagen-induced arthritis, asthma, atherosclerosis, bipolar disorder, depression, Huntington's disease, Parkinson's disease, sickle-cell disease, sleep apnea, Alzheimer's disease and anorexia nervosa.

But perhaps most exciting, cannabinoids (chemical constituents of Cannabis, the best known being tetrahydrocannabinol or THC) may have a primary role in cancer treatment and prevention. A number of studies have shown that these compounds can inhibit tumor growth in laboratory animal models. In part, this is achieved by inhibiting angiogenesis, the formation of new blood vessels that tumors need in order to grow. What's more, cannabinoids seem to kill tumor cells without affecting surrounding normal cells. If these findings hold true as research progresses, cannabinoids would demonstrate a huge advantage over conventional chemotherapy agents, which too often destroy normal cells as well as cancer cells."

Emphasis is mine.





Its beautiful!

20100908

I've quit smoking

Due to my MS I've been trying to become more healthy in my life...that and I have a kid now, which is the ultimate motivator, so I've quit smoking!!! Two days so far!

20100825

Tysabri pt2

So the tysabri infusion issue has been resolved, and I am receiving the infusion as I type this post. Woot! Such a load off mymind!

20100823

Pt.1 of tysabri issue resolved

I've had my physical today. Thanks to doctor Srodulski for getting me in so quickly. He is a king amongst doctors! Part of the physical was having a blood test done and I also needed one for Dr. Katsimakis (my neurologist), so I went to NCH's outpatient lab. Got my blood drawn, and man those ladies at that lab know how to stick people with needles. Graceful, quick and relatively pain free. So all that is done, and hopefully that will be situated by Wednesday in time for my Tysabri infusion. Go Natalizumab!

20100819

If the risk of PML isn't enogh

If you come down with PML,you also risk IRIS.

20100818

Bad news for the tysabri world

Biogen reported five more cases of 'Brain Infection', which I presume to be progressive multifocal leukoencephalopathy (PML). Those are the 1,000:1 odds I live with everyday to keep the MS at bay. Sigh.

20100817

Happy day

So I've had the problem with my treatment resolved. I'll be seeing my regular doctor Monday the 23rd [@ 8A : (] then I'll be having my infusion on Wednesday the 25th.

Its looking like a good day for oral MS treatments

From a NMSS newletter:

EMD Serono has announced that the U.S. Food and Drug Administration has accepted and given Priority Review to its application seeking approval to market cladribine as an oral disease-modifying therapy for relapsing forms of MS. A Priority Review means that the FDA will review the drug in less than the usual amount of time. This designation is given to drugs that offer major advances in treatment, or provide a treatment where no adequate therapy exists. The goal for completing a Priority Review is six months from when the application is submitted, meaning that the agency’s approval decision could happen in December 2010, but it might take longer.

In a large-scale phase 3 clinical trial, cladribine tablets significantly reduced relapse rates and other disease activity in people with relapsing-remitting MS. Read more about this study.

In November 2009, EMD Serono announced that it had received a “refuse to file” letter from the FDA for its original cladribine application submitted in late September, which usually means that the agency deems the application incomplete. On June 8, 2010, EMD Serono announced that it resubmitted its application to the FDA for approval of cladribine.

Another oral therapy for MS, fingolimod (Novartis International AG), is currently undergoing final review by the FDA after an FDA advisory committee recommended that it be approved. The agency’s approval decision for fingolimod is expected in September 2010.

20100805

Today was a first

Today was the first time I've ever missed a scheduled Tysabri infusion. Not because of my actions, but because the hospital told me two days before my next scheduled infusion that I need a physical before I can have the infusion. NCH obviously didn't care last month when I was also overdue for a physical. They didn't even tell me until two days before!!! Why can't you look the other way and make sure I get a physical before the next infusion? Its sad as can be when hospitals allow bureaucracy to trump patient care. Shame NCH!

20100803

Infusion Troubles

So the Ambulatory Infusion Center (AIC) called the house today to tell us that I need a physical before my next infusion...which is on Thursday (today is Tuesday). Perhaps they don't like me and just don't want me to show up? Shelby, who answered the phone, was very upset about this and gave the caller a piece of her mind, stating "you wouldn't make a cancer patient wait for their meds!" (Paraphrased, but she was very cordial). So Shelby called my doctors office and - guess what - my primary care doctor is on vacation for two weeks, never mind that physicals are scheduled three months in advance. So I'm up the creek waiting while Shelby tries to figure out what I'll do. Thanks AIC, your indifference towards my treatment (which costs $10K/mo.) is disconcerting. Thank you : (

20100705

Year review

I had my one-year-on-tysabri follow-up with my neurologist last week. During the visit he reviewed my MRI and he was quite pleased with the results. He saw no new or enhancing lesions on my brain. And I'm not showing any signs of an allergy or development of antibodies. That effectively means my MS is in remission (because of tysabri, I'm not treating it holistically). That is the best news I could get! The damage that has been done thus far is irreversible, but it is minimal, and with the drug stopping things in their tracks, it looks like the hope of (somewhat) normal life returns. Oh happy day! Now lets just hope this stuff isn't like L-dopa (the parkinsons drug that over time loses effect).

20100627

So I had my MRI to check on the trysabri progress

And the results are unofficially very promising. Shelby says it looks like the Tysabri is working as expected. I'll be visiting my Neurologist on Thursday to get some official results.

Yea for Tysabri! Thank you Biogen and Elan! Now just find a f****ing cure!

20100610

Another 28 days

So here I am getting another infusion. Perhaps the new decade is bringin good luck- or I'm just getting used to the infusion. One needlestick today!!!

20100522

Major News!

Dr. Palaos Zamboni's solution to CCSVI (or liberation technique) was featured in the National Multiple Sclerosis Society's magazine moementum, from which I quote, "One subject...reported being able to dream for the first time in years".

Holy **** this was like having a 2000 lbs bomb dropped on my head (figuratively). It relates to me so closely, as I haven't remembered any of my dreams for years. Since you don't hear about loss of dreams (literally, not figuratively) when relating to MS, it really blew me away to hear this. It really makes this treatment look promising and gives me such great hope. I know that it'll be years off as testing and whatnot will have to be done, but to think they have found a solution to something for which there was nothing that could be done 15 years ago really says something about people and their drive to a cure- And Dr. Zamboni wasn't looking for a big payout or anything like that - his wife has MS. His treatment is most likely altruistic.

If this all pans out, I thank you Dr. Zamboni - tremendously! More than you can imagine. Thank you! Thank you! Thank you! You are my hero! Although I have never met you, you may have seriously changed the course of my life, and for that I am forever in your debt, again if it all works out. THREE CHEERS FOR DR. ZAMBONI!!!

The NMSS has a PDF on the article





Here is a good unofficial breakdown some dude did


20100516

From the rumormill

A radioslogist was talking with Shelby at Shelby's work about Paolo Zamboni's (cool last name) liberation technique.The radiologist suggested they scan me to see the results. Pretty cool I'd say! I doubt I'll be letting anyone cut me open - until they have some more promising results. I'm not in a bad way, I can wait.

20100514

Another infusioin down

Unfortunately, they won't be stopping until something better comes along. But I digress. Today's infusion went fairly well. Only two needlesticks - seems to be par for the course. Lucky for me my wife got to stay for the entire infusion! That was nice. Its always nice having the company of someone you love while undergoing medical procedures.

20100428

6 days

Only 6 days left for me to raise money for my MS walk team. So far i have gotten $175 of my $500 limit. Won't you help me in my fight against MS? Donations are accepted on my facebook wall. Look on the left!



MS sucks!

20100425

Ms walk in one week

The MS walk is in one week. Next Sunday (2010.05.02)! If you would like to visit my team and I - join us on Chicago's lakefront! Donations are always accepted - Talk to shelby or visit my facebook page.

20100415

Not bad today

Today's infusion wasn't that bad. Had the Packers fan, but she only stuck me twice. As long as its less than 3 times, its a win in my book.
Kind of sucked though, as we had no one to watch Zie so Shelby had to stay home with her and then take her mom's car to work. Bummer.

20100409

WalkMS - Taft style





20100401

What is MS?




This is the simplest explanation I could find.

20100322

I Believe!

President Obama got the health care reform passed. As a person with MS, I was terrified that I would meet my lifetime maximum fairly early and then descend into disability as my health insurance ran out. I was also terrified that I would never be able to get insurance outside of an employer (preexisting condition*). You've made those worries of the past, and for that I thank you Mr. President!



I believe

*How can it be a preexisting condition? Wouldn't it just be an existing condition. YATIH!

20100318

Dude, I'm with the president too!

On the topic of health care

Im Here For MS

Not a bad infusion this time

Lucky for me Bujana only needed one try to get the IV in! I love you Bujana!!! And I apologize for likely misspelling your name.



Not so much the such this time

20100317

Keep Moving

Its a new site that documents videographers with MS discussing issues related to MS, from the NMSS.

20100316

MS Week: Success





Chicago in Orange


Chicago Theater Showing Support for the Fight against MS
Images from NMSS:IL Chapter Web site. See the antennae in orange on the SEARS tower?


The mayor also made a proclamation recognizing MS week.
The State (of IL) got in on the action too!

20100308

MS Awareness Week begins

Yesterday actually marked the beginning of MS awareness week.

In honor of MS week - and perhaps longer - I've changed the background of my page to MS Society Orange.

20100307

Be aware people

Quackwatch - Be wary of multiple sclerosis cures: http://www.quackwatch.org/01QuackeryRelatedTopics/ms.html

20100302

Cold : (

Man I'm suffering my first real cold in a few years - since starting the Avonex (which is an anti-viral marketed to MS sufferers). Shelby and my MIL went to the urgent care clinic from a cold we all caught, all I got was a runny nose. Avonex was a godsend - in a way. It was a weekly self-injectable (thank you wife for making it spouse-injectable, as I couldn't handle giving myself an injection). Unfortunately, it wasn't giving me the results my neurologist had hoped, so he put me on Tysabri. Tysabri rocks out with its **** out, as I no longer had any enhancing legions in my brain or flu-like side effects, but I no longer had the cold protection that Avonex provided.

So here I am today - four days after my cold started (started Feb. 27) - reminiscing of the joy that Avonex brought me with my nose runny as hell, ears as stuffed as can be, and labored breathing. Tis a trade-off though, I'd rather deal with a cold once in a while than have to deal with weekly injections that make you feel like you have the flu for a couple days.

20100221

Hello

Hello to the ladies of leidig, who my aunt (who also works there- HI!) tells me that they are consistently checking my MS Blog.

Sorry I don't update this blog more often. As much as I hate to disappoint everyone, it is much better that I don't have any additional symptoms/problems to report.
As long as the Tysabri keeps working, hopefully all I will really have to keep talking about is needle sticks (I hate needles).

Hope all is well for everyone up there in the Prudential Building!

And remember, MS sucks - and I'm not wholly talking about Multiple Sclerosis! ; )

20100218

20100215

bummer

I've got another infusion coming up on Thurs. I realized this Saturday, which is less than a week. I guess I'm getting more used to it. Still a bummer though : (

20100126

Say what?

As there is no good statement for quote in this paper, and I don't really understand it other than I think Scientists are saying that they found the a missing protein that is the cause of demylenation...in mice at least. Hopefully this will turn out to be a big find that'll lead to major updates in treatments...or even a cure!

20100122

Another infusion

Nothing important to report. Everybody at the Ambulatory Infusion Center was nice as usual. The hospital food has never meet the first meal I had received, and thats a bummer. Always nice to be served lunch though. The needlestick went as well as one could expect, and it wasn't in the 'Ambulance Vein':


tysabri infusion

20100120

d'oh

Man, I have another Tysabri infusion tomorrow. It has arrived too quickly. Woe is me : (

20100106

Dear Family and Friends,

I've joined the movement to create a world free of MS On Sunday,
May 2, 2010 I will participate in Walk MS,
Bloomington location. This fund raising event
benefits the Greater Illinois Chapter of the National Multiple
Sclerosis Society. Approximately 400,000 people nationwide, including
20,000 here in Illinois, live with multiple sclerosis.

Multiple sclerosis interrupts the flow of information between the
brain and the body and stops people from moving. With the help
of people like you, the National MS Society, Greater Illinois Chapter
can mobilize people and resources to drive research for a cure and to
address the challenges of everyone affected by MS. I am writing
to ask you to join the movement by participating in Walk MS or kindly
include a donation to my fundraising efforts. Every dollar
raised helps to fund research, programs, and services for those living
with MS. This is made possible by people like you--friends,
family and associates who support my fundraising goals and the goals
of the more than 12,000 people who will be walking with me.
Please join me to create a world free of MS.

It's faster and easier than ever to support this great cause--
you can make your donation on line by clicking "Support"
and follow the prompts. If you prefer, you can also mail your
tax-deductible contribution to me or directly to the Greater Illinois
Chapter. Please make checks payable to the National Multiple
Sclerosis Society and include my name on the check's memo
section. I ask all donations be made prior to the Walk MS event
date of May 2, 2010. Visit http://www.msillinois.org/ to find
more information from the National MS Society, Greater Illinois
Chapter.

To make a donation online, visit my Walk MS donation page.

I appreciate your support and will keep you posted on my
progress. Together we can create a world free of MS.
Thank you for your support.

Sincerely,
Mike

visit my personal page


.



To send a donation post, mail to:
Michael Johnston
1016 Stratford Cir
Streamwood, IL60107-2101

Make all checks payable to: National MS Society

20100105

Happy new Year!

2010 is here. Already!!! So where are the flying cars we were promised!