caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

Subscribe (RSS)

no larry

My bloglines



November 2004
December 2004
January 2005
February 2005
March 2005
April 2005
May 2005
June 2005
July 2005
August 2005
September 2005
October 2005
November 2005
December 2005
January 2006
February 2006
March 2006
April 2006
May 2006
June 2006
July 2006
August 2006
September 2006
October 2006
November 2006
December 2006
January 2007
February 2007
March 2007
April 2007
May 2007
June 2007
July 2007
August 2007
September 2007
October 2007
November 2007
December 2007
January 2008
February 2008
March 2008
April 2008
May 2008
June 2008
July 2008
August 2008
September 2008
October 2008
November 2008
December 2008
January 2009
February 2009
March 2009
April 2009
May 2009
June 2009
July 2009
August 2009
September 2009
October 2009
November 2009
December 2009
January 2010
February 2010
March 2010
May 2010
June 2010
July 2010
September 2010
November 2011


Friday, December 16, 2005
December 2005 Archive
FDA Warns MS Patients Not to Use Leukemia Drug Campath
2005-12-02 09:42:08

The Drug Injury Watch site is reporting this interesting story about the FDA issuing a warning not to use this drug, however, it's not even an approved MS drug!  

This FDA warning about Campath and MS is a bit unusual because Campath is not approved to treat MS.  It seems that the FDA issued the Campath warning due to a concern that some doctors may be prescribing Campath "off-label" as an MS treatment.

The three patients from the Campath - MS study whose cases were reported to the FDA in September had developed idiopathic thrombocytopenic purpura (ITP), a blood disorder that causes one's body to attack its own blood platelets.

It's snowing!
2005-12-02 10:41:23

Crazy. We have snow! It just doesn't happen very often here, so it's always a great big treat. Oh, and the city shuts down. I'm not kidding. It took 2 hours to get to work on the day that it snowed 5cm's! Funny eh?

I'm pretty happy, Tod is back in town for a whole 5 days! Yay! We're going to do a podcast later today, so I'm trying to figure out what show I want to do. It'll be good to get back to doing them though. It's been too long!

Here's one of my latest paintings.... slow but steady progress I think ;) Sorry for the bad photo of it. I didn't have the good cam handy.


Wish me luck
2005-12-08 09:51:49

I'm heading to the MS clinic in about a half hour for my yearly checkup. I'm seeing my new Neurologist and the Neuro Opthalmologist. I'm feeling a little weird about it all. I guess this being the first yearly reminds me of the "realness" of this disease. Anyways, I'll update later on how it all went. 
Incredible fundraising
2005-12-08 23:09:54

Holy smokes. Dave has raised over 1000 POUNDS and is going to jump from a plane tomorrow all for MS! A thousand pounds is about 2500 Canadian! Boy do I have a challenge for next year's walk. Way to go Dave. I can't wait to see the pictures! And thanks for investing in all our futures. :)
My first year check up at the MS clinic
2005-12-08 23:41:12

Okay, I feel a whole lot better having that appointment out of the way. My new doctor is great. She's so confident and well... a woman. Thats a first for me. All my doctors are male. So, the good news is that she couldn't find any outward neurological deficiencies on the neuro exam. And I can hop on one foot in one spot so my balance is really not that bad. Wow, I never thought I'd be proud to be such a good hop-on-one-foot patient! hahhaha!

She doesn't want to do yearly MRI's to track progress though. She wants to go on clinical signs and then MRI to track if necessary. She is also in agreement to not do any of the ABCR meds right now as there is just no point in starting one, then stopping to get pregnant. She also said something that kinda made me happy which is that she usually tells typical RRMSer's who do want to start family, to start right away. The less symptoms right now, the better to start a family with. But she said that for me, I'm doing so well with the disease that she doesn't see any issues with waiting another year, or whatever we want. I'm young enough, and symptom free enough to go at this pace. Small victory I suppose but it made me feel good to know that there isn't an immediate urgency around starting a family.

I also have made a decision about doing a clinical trial. I signed up for the L-000124467 at the clinic and they'll contact me shortly to start the process. The problem with me doing the trial is that I have to have an active lesion. Adn it seemed like my Neurologist didn't think I would have one that would qualify me. So, we'll see. She talked a little about the drug and it appears to be a very similar Tysabri type/style drug. Its an immune regulator and not viral like an interferon. It is an oral med, so no injections! The meds attach themselves to monocytes and piggyback their way past the brain barrier to get into the brain and spinal column. One can only hope that once the drug is there, it prevents the attacks on myelin. So, a worthy trial to be a part of I say.

And lastly, she didn't think it was a good idea to name my lesions. I disagree. Larry is staying ;)

Please take our survey!
2005-12-10 16:00:55

Hi there! Tod here. We'd like to gather some information about who's reading this site and listening to Kim's podcasts. This will help us better understand who's there and so we can make this the best possible content for M.S. people we can! It only takes 60 seconds to complete, and you can stay 100% anonymous. So please...

Click here to take the survey (only takes 60 seconds)

Richard Pryor dies
2005-12-10 16:05:59

Just saw the news that Richard Pryor has passed away. He had a major heart attack. 
Interesting study in mice for Primary and Secondary Progressive
2005-12-10 20:01:00

Entrez PubMed summary: This mouse study used a model of progressive MS and found evidence of lymphocyte “cell suicide” in peripheral lymphoid organs, and they postulate how this leads to an aberrant autoimmune response. Perhaps they're getting closer to finding out what exactly moves the disease to this rate of relapse.
Copaxone is helping to repair damage
2005-12-10 20:09:56

A new study out is showing that Copaxone (or Glatamir Acetate-GA) is having a repairing effect. 

"Our data shows that treatment with GA leads to axonal metabolic recovery and protection from sub-lethal axonal injury. These results support an in situ effect of GA therapy inside the CNS and suggest potential neuroprotective effects of GA"

Furnace heat is nice!
2005-12-12 19:35:16

Wow, we just had a new furnace installed. It turns out the heap of junk that the builder put in was only 80% efficient and the duct work was full of holes and done wrong. I just got to feel for the first time what proper heat is supposed to feel like! How luxurious! Damn, I sure don't like the bill we have for it just 2 weeks before Christmas. Ugh. 

On a better note, I have done all my Christmas wrapping! I only have a few other gifts to pick up, or knit to finish and then its all done. Well except for the turkey and trimmings.

Interesting results coming through on our survey (right hand column!). The stats so far are following just what they say. 67% female and 33% male. Cool.

And now, its time to get back to reality and go to work tomorrow. This was a nice relaxing weekend. Too bad Tod's flown off again for another week!

Meet our new family members!
2005-12-17 10:52:15

Lounging on their new sofa
Originally uploaded by OnlineKim.
Look what happens when Tod goes out of town for a week! These little sisters needed a home. They were sent to a shelter from up north and were set to be put down, so I took them home. They're a bundle of energy and tonnes of fun. But we don't yet have names for them! Anyone have any suggestions?

Ecstasy might help MS research?
2005-12-18 17:23:15

Interesting article posted over at the accelerated cure project... The drug Ecstasy actually seems to open the door to the blood brain barrier. Makes you wonder if they could figure out that process and then effectively stop whats going on inside the brain from an MS perspective. 
BHT-3009 - new drug shown to down-regulate T cells
2005-12-19 10:26:22

Wow, more new drugs moving into further clinical trials. Heres the claim on this one:

In a number of patients with myelin basic protein (MBP) specific active T cells, BHT-3009 was shown to down-regulate these T cells, the primary cause of MS, an autoimmune disease. Left unchecked, the MBP-specific T cells shred the protective myelin sheath that encases the neurons responsible for nerve transmission. The absence of the myelin sheath results in unpredictable and increasingly destructive short circuits in the body's central nervous system, critical to life function. While scientists don't yet know what causes this pathology in MBP-specific T cells, when these T cells become pathogenic, they cause MS. Bayhill's drug development specifically centers on shutting down the disease causing activity of these MBP-specific T cells. From pre-clinical concept to clinical demonstration, the specifically of Bayhill's DNA plasmid therapy has resulted in a strong safety profile.

And on a personal note.... can drug companies please stop naming their drugs with random numbers and letters and choose a name?!! Thanks ;) 

Merry Belated Christmas :)
2005-12-28 21:28:07

Finally getting back online and catching up on emails! I hope all of you had a great Christmas. We had a nice busy one as always and my turkey dinner seems to get easier and easier every time I do it ;) All our families are back in their homes safely and I'm back to work tomorrow. Unfortunately, I'm stuck with a terribly sore throat at the moment, so wish me luck that this weird and whacky immune system I have kicks it fast! It's year end at work this week! Ugh! The timing! 
CBC News: Ottawa team unravelling brain damage in MS
2005-12-28 21:35:17

CBC News: Ottawa team unravelling brain damage in multiple sclerosis Closer and closer it seems.... "To make the discovery, Stys's team invented a state-of-the-art laser scanning microscope technique to look closely at living myelin from a rat model. They discovered the surface of myelin has tiny open pores that provide a gateway for calcium to enter. If too much calcium enters, it can injure the myelin and affect our ability to walk, talk or see. Stys and his team also found a drug already on the market to treat brain disease can block the pores of the myelin sheath. "When we put these drugs on it, it greatly reduced the injury to the myelin and greatly improved the ability of these nerve fibres to conduct and transmit nerve impulses," Stys said. "
Happy New Year 2006
2005-12-31 23:32:40

Happy New Year 2006
Originally uploaded by OnlineKim.
Cheers everyone! Here's hoping 2006 is a healthy and peaceful year.