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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Thursday, March 16, 2006
March 2006 Archive
Thank you Toronto a second time!!
2006-03-04 19:20:56

» Thank you Toronto! (I Love Radio .org) Tod held his radio making seminar today and all registrations for the all day workshop were straight donations to the Canadian MS Society. $4,557.90 raised!! WOW! That means Tod reaches his goal of $5000.00 and now is aiming for $7500.00! How can I compete!?! And on a couple more personal notes, I couldn't be more proud of my husband for donating his skills and using his brilliant head to come up with this idea to raise money for MY/YOUR/OUR future! And thanks SO much to the Toronto attendees of the seminar. Your generousity is truly humbling and an amazing contibution to MS. Thank you!!! Oh, and if your wanting to help me catch up to Tod here is a direct link to my MS walk page!
Tysabri released results from the lastest trials that the FDA will review tomorrow
2006-03-05 22:44:47

Okay, here's some quotes from the report: Two-year results from the two Phase III clinical trials evaluating TYSABRI® (natalizumab) for patients with relapsing forms of multiple sclerosis (MS), as well as data from the comprehensive safety evaluation of the product were published for the first time in this week's issue of The New England Journal of Medicine. Two-year AFFIRM Phase III monotherapy data published today showed that treatment with TYSABRI reduced the risk of disability progression by 42% (p>0.001), the primary endpoint of the study, and led to a 68% reduction (p>0.001) in the annualized relapse rate compared to placebo. TYSABRI treatment also resulted in sustained and statistically significant reductions in brain lesion activity as measured by MRI. The two-year SENTINEL Phase III data also demonstrated that treatment with TYSABRI in addition to AVONEX had a significant effect on disability progression, relapse rate and brain MRI disease activity compared to AVONEX alone. Biogen Idec and Elan collaborated with leading experts in MS and progressive multifocal leukoencephalopathy (PML) to complete a safety evaluation of more than 3,000 patients who had received TYSABRI. An Independent Adjudication Committee, established as part of the safety evaluation, today published its findings that concluded there were no new confirmed cases of PML in patients treated with TYSABRI beyond the three previously reported by the companies.
Johns Hopkins University may have found a new test for MS?
2006-03-05 22:54:46

Check out this release of info on trying to come up with a better testing method for MS. "There is the possibility now that the protein we identified, 12.5 kDa cystatin, can be used to diagnose MS, perhaps in its earliest stages, and also to monitor treatment by measuring its levels in CSF," said Avindra Nath, M.D., professor in the Department of Neurology at The Johns Hopkins University School of Medicine and lead author of the study. The Johns Hopkins researchers started with human CSF and found that the protein 12.5 kDa cystatin is actually a breakdown product of a larger protein called cystatin C or 13.4kDa, which in turn blocks activity of some enzymes, including cathepsin B. Cathepsin B has been associated with MS's disease pathway, a breakdown of the myelin sheath, the covering of nerves along which electronic signals from the brain travel. "Those patients who had more of the breakdown product of 12.5 kDa cystatin also seemed to have the highest cathepsin B inhibition," Nath said.
We have a forum now!
2006-03-06 20:15:34

Yay! I'm a little behind on posting this as Tod set this up ages ago for me, but I do have a forum now for the podcast and blog. Feel free to comment on whatever you want and pipe in when you feel like it. Click here to enter!
Tysabri gets a Yes vote for coming back to market
2006-03-08 12:10:10

More to come on this one I'm sure, but here's the FDA's release about it. The FDA's final decision comes at the end of the month.
Canadian stem-cell study "erases" multiple sclerosis
2006-03-15 20:29:58

A woman near Ottawa has surpassed all expectations after risking her life to take part in a medical experiment for multiple sclerosis.      In 1996 at the age of 21, Jennifer Molson of Kanata, Ont., woke up with a tingling in her fingers that spread to her arms. Within a few months, she could hardly move her left side.      Molson was diagnosed with multiple sclerosis, an autoimmune disease in which the body's immune system attacks itself, causing damage to the spinal cord, nerves and brain.      Molson has the most common form of MS, the relapsing remitting variety, said Dr. Mark Freedman, a neurologist in Ottawa.      She eventually needed to use a cane and leg brace and was headed for life in a wheelchair. Freedman asked her to become involved in a medical study with a big hitch. More at
Copaxone and Cholesterol drug combo seem to show good signs
2006-03-19 17:40:38

I love that reserchers are looking at existing drugs to find out if they have other uses. And here's what they're saying about Lipitor:

"Lipitor is a cholesterol lowering drug that has previously been shown to improve MS symptoms. Glatiramer acetate (Teva Pharmaceutical Industries Ltd.'s Copaxone) is a drug currently approved for MS treatment. The researchers found that treating MS with combinations of immune modulating drugs can greatly reduce MS disease.

According to the researchers, treating EAE (experimental autoimmune encephalomyelitis) mice with the combination therapy caused the animals to lose less myelin, prevented CNS inflammation, and MS disease incidence"

Tovaxin trials beginning in April
2006-03-19 17:54:45

If you've been following this vaccine or Tims' story on how he's been doing in the trial, they have announced moving to another trial in the US with 100 people getting the vaccine. Let's hope they continue to get such good results! UPDATE: Tim sent me some eligibilty criteria.

Ages Eligible for Study: 18 Years  -  50 Years, Genders Eligible for Study: Both
Inclusion Criteria:
  • Age 18 to 50 years old
  • Diagnosis of "High Risk" CIS defined in protocol or
  • Diagnosis of MS within the past 5 years according to the McDonald criteria (2005)
  • Baseline EDSS score between 0 and 3.5 inclusively
  • Â

    Painting = fatigue
    2006-03-26 20:53:08

    I love painting. Walls that is. And I've been meaning to paint my master bedroom for some time now, so I'm half way there! The problem is that I'm exhausted! And I totally threw my back for a loop. Argh. How irritating to *want* to do something and have my body say "no thanks". So, i'm glad to be gonig to my massage therapist tomorrow afternoon for some much needed relief. Thank god for him! Tod and I changed around our office tonight. Now, we sit facing each other and podcasting will be wayyyyy easier! It's pretty nice. Luckily our office is just big enough to do this change and thanks to Ikea for providing scaled cutouts of our desks so we could do it all on paper first. Tod had fun playing with graph paper :)
    I figured out the metallic taste!
    2006-03-27 14:14:15

    I finally put two and two together and figured out that I was getting a metallic taste after taking a sleeping pill my Neuro gave me. I don't take it very often but it finally occured to me that the morning and full day after I have taken it, I have the metallic taste. There are some side effects about a bitter taste that I found online about it. Weird stuff.
    Appear on the M.S. Podcast!
    2006-03-31 21:40:13

    Want to appear on the M.S. Podcast?      We turn our Skype account ("mspodcast") on when we're recording a show, so if you've got a microphone and Skype and would like to do a guest-appearance, just add mspodcast to Skype and give us a call! Or just click here: callto://mspodcast