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.

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Sunday, April 27, 2008
What a success!

The MS Walk this morning was a great event yet again this year! The rain held off until about 1/2 hour after the event was done. Perfect timing! I'm proud to say that Team Mandatory Rest Period placed 3rd for raising $3810.00 and I personally placed 2nd for individuals raising money with $3410.00! Yay! Thanks to everyone for your support!

Wednesday, April 23, 2008
4 days left and just under $1700 to go!
Fundraising progress continues for the MS walk this Sunday and the countdown is on! I've raised $3310.00 which is just a humbling and outstanding amount. I'm so grateful to all who donated! If anyone else can contribute in any way, here is my link for online donations!


Tuesday, April 15, 2008
FTY720 - Fingolimod news!
I've been waiting to see more come out on FTY720 or Fingolimod that I'm (maybe) on for ages now! Yay! And good results are still coming from the trials and in particular, results from folks that have been on the drug for 3 years. I'll be happy if I get to stay on the extention trial!

"The results reported are from an extension of a six-month study with 281 people with relapsing MS, two-thirds of whom took the drug FTY720 (fingolimod) and one-third of whom took a placebo. After six months, those taking FTY720 had more than 50 percent fewer relapses, or attacks, than those who took the placebo. At that point, all of the participants could enter an ongoing extension of the study where all would receive the drug.

A total of 173 people have finished three-years of the study. Continuous use of the drug led to sustained low relapses, with more than 67 percent of the participants remaining free of relapses after three years. In addition, the inflammatory activity associated with MS, as assessed by MRI scans, remained low, with 89 percent of patients free of disease activity and 75 percent of patients free of new or newly enlarged lesions.

“The first line treatments for MS, beta interferon and glatiramer acetate, reduce the relapse rate by only about 30 percent, so this is a significant development for people with MS,” Comi said.

The most frequently reported side effects of the drug were headache, fatigue, flu, and cold symptoms.

FTY720 is an immune-modulating drug that binds to a receptor site on immune cells, sequestering them in the lymph nodes. As a result, FTY720 reduces their ability to cause damage associated with the symptoms experienced by people with MS."

Rituxan didn't slow PPMS in trials :(

Too bad. A potential PPMS drug Rituxan did not come through when the trial data was compiled.

"A late-stage clinical trial of oncology drug Rituxan failed to show it was effective in treating a certain type of multiple sclerosis, according to Genentech Inc. and Biogen Idec Inc. and Biogen said that in a Phase II/III trial, Rituxan didn't show the antibody-based medication could effectively slow the progression of primary-progressive multiple sclerosis, or PPMS.

The companies added that currently there are no effective treatments for PPMS, a particularly hard to treat form of the disease. Rituxan is already approved for the treatment of non-Hodgkin's lymphoma and rheumatoid arthritis."

Tuesday, April 8, 2008
Mmmm... More Coffee please!
Ahh if only it were that easy. One more cup of coffee a day and my MS will go away?! :) Okay, not quite, but interesting article about what mice are experiencing.

"Caffeine appears to help ward off multiple sclerosis, at least in a preliminary animal study. Mice given caffeine were 75 percent less likely to develop the animal model of MS than those not given it, said study senior author Dr. Margaret Bynoe, an assistant professor of microbiology and immunology at Cornell University School of Veterinary Medicine, in Ithaca, N.Y.

"The 25 percent who got it got mild cases," she said, although she noted the research is preliminary and the trials were in mice that had the animal model of MS.

Why does caffeine help?

Caffeine is known to block a compound called adenosine. "Inhibiting adenosine prevents the infiltration of lymphocytes [a type of white blood cell involved in immune system response] into the central nervous system," Bynoe explained. "If the lymphocytes cannot get in, you cannot get the inflammation characteristic of MS. The inflammatory response is what causes the damage to the myelin covering the nerve cells."

Bynoe believes her team is the first to demonstrate this mechanism.

In the animals given caffeine, the equivalent of 6 to 8 cups of coffee a day for humans, "there was a reduction in the inflammation, the pathology, a reduction in the brain pathology," Bynoe said.

Adenosine plays a crucial role in many body processes, including energy transfer, the promotion of sleep and the suppression of arousal. On the cellular level, caffeine can bind to the same receptors as adenosine, preventing the adenosine from attaching to cells in the central nervous system.

The new finding is "certainly deserving of further study," said Dr. John Richert, executive vice president of research and clinical programs for the National Multiple Sclerosis Society."

Wednesday, April 2, 2008
Top 5 MS Myths
I do believe this comes from the Avonex site... interesting nonetheless.

Myth #1:
Being diagnosed with MS means you will no longer lead a normal life.

Fact: Many people with MS go on to live long and normal lives, and continue to pursue their personal, work and family goals with the help of effective and early therapy.

Myth #2: All people with MS end up in a wheelchair.

Fact: According to the National Multiple Sclerosis Society (NMSS), most people with MS will remain mobile, although some may need assistance as the disease progresses

Myth #3: MS drugs make a person sicker than the disease.

Fact: Common side effects associated with a treatment such as flu-like symptoms often diminish over time. The benefits of starting treatment early can outweigh side effects of the drug.

Myth #4: Nothing can slow the progression of MS.

Fact: While there is no cure, there are several FDA approved treatments that have been proven to modify or slow the progression of physical disability.

Myth #5: People with MS have to reduce physical activity.

Fact: Many people with MS do not need to lower their level of activity. Moderation is the key and people with MS must learn to listen to their body.

Need to raise more money for MS!

I'm about to be overtaken! Help me raise more money for the MS Society!

(From the MS Society site)

Top 10 fundraisers

Kim Maffin $1,475.00
Tera Mccreesh $1,000.00
Dallas Reeves $875.00
Angela Gil $702.50
Shari-Lyn Mallinson $685.00
Julia Zylberberg $575.00
Monique Groom $533.50
Mary Anne Bizis $500.00
April Sitybell $415.00
L. Lloyd $375.00

Top 10 fundraising teams

Mandatory Rest Period $1,475.00
Kevin's Heroes $1,405.00
M-Power $1,140.00
BFL Lions $533.50
Team Kir-agious $460.00
Team Lolo $450.00
Team Godin $270.00
The A Team - Tri-Cities MS Support Group $250.00
MScapades $145.00
the girls $100.00

Tuesday, April 1, 2008
7 injections left to go!
Wow. 7 injections left to go before I'm done with injecting myselfe with Avonex (or not) for the clinical trial! Where did the time go!? And amazingly enough, my last two injections went so well you can't even spot the holes right now. No tracks on my legs is a lovely site... hahahhaha.

The next step will be getting the info on staying on Fingolimod for the extention study. I don't have the details at this point. I'm the first person in the Fingolimod vs. Avonex trial at UBC so they didn't quite have the info yet. I'll have to seriously think about the what ifs around it. At last with injecting myself I have been gauranteed to be on something all this past year. If I happen to be on Avonex, I imagine the extention for me will be on a sugar pill. I'm not sure I want that! And of course with it all being double blind, I won't find out the results for years to come. Hmmm...