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, June 16, 2005
June 2005 Archive
A fourth illness may be tied to Biogen's MS drug
2005-06-02 18:56:00

Yikes. More bad news for Biogen's Tysabri or at least the combo of being on Avonex and Tysabri together.

"The Globe obtained the report of the unconfirmed case under the Freedom of Information Act.

After being provided a copy of the report by the Globe, Dr. Patricia K. Coyle, an MS specialist and acting chairwoman of the Department of Neurology at the State University of New York at Stony Brook, said she thinks the FDA should investigate the new report ''quite vigorously."

The possible fourth PML patient is a 48-year-old woman who was taking Tysabri along with Avonex, another multiple sclerosis drug sold by Biogen Idec."

My MS wristbands are finally here!
2005-06-02 20:06:00

They're finally here!
Originally uploaded by OnlineKim.

Yay! The MS wristbands have arrived!

Idaho making an attempt to better track MS
2005-06-03 15:35:00

Interesting article about what the state of Idaho is doing to better understand their population of MS. Good on them for making these steps! Hopefully they will post results over the years of data collection.

PharmaFrontiers Announces Positive Interim Results of Two Phase I/II Clinical Trials for Multiple Sclerosis
2005-06-03 15:44:00

Potential new drug for treatment of MS! Looks like they are aiming for phase III trials to start in 2006 providing all trials keep going this well.

Tovaxin(TM) is a trivalent formulation of attenuated myelin-peptide reactive T cells (MRTCs), which are derived from peripheral blood and produced ex vivo as myelin basic protein (MBP), proteolipid protein (PLP) and myelin oligodendrocyte glycoprotein (MOG) reactive T cells.

A different way to fundraise money for MS
2005-06-04 07:44:00

Okay, so hats off to Vix for choosing to raise money for MS research. I, for one, couldn't imagine baring it all even for the greater good!
**Don't open the link at work**

Mia posing in the grass
2005-06-04 08:01:00

Mia posing in the grass
Originally uploaded by OnlineKim.

My neighbor and her dog had a little surprise today... Its called Kool-aid!!

If your on Betaseron
2005-06-04 20:15:00

Head on over to Becca's site to check out what she learned at a recent Beta conference. Good stuff.

Rufous Hummingbird flying in for some food
2005-06-05 23:37:00

Patience pays off. Nuff said. :)

It just doesn't make sense
2005-06-07 01:28:00

In news from the US, the opening line of this article just says it all (shaking
my head) -

"People who smoke marijuana because their doctors recommend it to ease pain can be prosecuted for violating federal drug laws, the Supreme Court ruled Monday, overriding medical marijuana statutes in 10 states."

Map with highlights of where we're travelling!
2005-06-07 20:38:00

This map is on our wall in the office as a reminder of our upcoming trip to Europe. We're going to fly into London and spend a few days there (mostly going to the theatre!) and then we're hopping on a cruise ship for 10 days to play around in several cities. The trip is one month away now! Let the countdown begin!

Fun trips coming up
2005-06-07 20:40:00

In the next couple months we have some great trips! Next Thursday we fly in to Edmonton and then drive in to Jasper. Its absolutely gorgeous there. Tod has some business to do and then we'll stay there for a couple days to relax and play. I can't wait to play with my digital camera at the lake!

In July we're off to Europe! This will be my first time overseas! I can't wait. We're going on a 10 days cruise and will be stopping in Germany, Denmark, Norway, France, Beguim and the Netherlands! Wow. I'm a little worried about the trip over and how my back will fair. And the 9 hours difference might be a little crazy, but I imagine that the excitment of being over there will override all that! :) We're looking at seeing a couple plays while down there. Our hotel is right by the theatre district so we'll be able to just walk over. Anyone recommend something we should see? So far the must-see shows are Chicago and Blood Brothers. I wouldn't mind Chitty, chitty, bang, bang too.. but I don't think Tod is all that keen.

2005-06-08 04:05:00

A new drug in clinical trial phase II is receiving some promising results. They plan to move to phase III by the end of this year or so. Some info on the drug:

TovaxinTM is a novel T-cell therapeutic vaccine that parallels the concept of autologous cancer vaccines. Instead of modifying cancerous cells, TovaxinTM consists of attenuated autoreactive T cells. Attenuation of these cells during the vaccine production process renders the cells non-replicating but viable and causes them to elicit an immune response when injected subcutaneously into the patient. This immune response is directed against T cells within the patient that are self-reactive with myelin. This immune response, directed against a specific subset of autoreactive T cells, greatly reduces the number of these autoreactive cells in MS patients. TovaxinTM has considerable potential because it attacks the underlying cause of MS rather than just addressing its symptoms.

Also found this site with Tim talking about being on the drug in the trial.

Warning: Do not use GHR-15
2005-06-08 15:02:00

Health Canada issued a warning to consumers Tuesday not to use a product
labeled GHR-15 or GHR that is sold as a treatment for a wide variety of diseases
including cancer and multiple sclerosis.

The department said labelling for the product - purported to be a human growth hormone supplement - makes unsubstantiated health claims. It suggested users risk developing hyperthyroidism as well as possible interactions and allergic reactions by taking the product.
GHR-15, which is not authorized for sale in Canada, is sold over the Internet in capsule and powder form by BIE Health Products (Canada).

Human growth hormone therapy has not been proven to be effective when taken orally and people taking GHR-15 are unlikely to experience any therapeutic benefits, the department said.
GHR-15 can also cause hyperthyroidism, which can lead to a variety of symptoms including increased heart rate, elevated blood pressure, abnormal heart rhythms, excessive sweating and nervousness and anxiety.

COPAXONE Produced Significantly Greater Reduction in Relapse Rate Compared to Beta Interferon Therapies
2005-06-09 15:44:00

Results from a still on-going independent study published in the European Journal of Neurology demonstrate COPAXONE(R) (glatiramer acetate injection) is associated with lower relapse rates than interferon therapies in patients with relapsing-remitting multiple sclerosis (RRMS). Compared to interferon beta 1b (Betaferon(R)), interferon beta 1a (Avonex(R)), and 22 microgram interferon beta 1a (Rebif(R) 22), COPAXONE(R) produced a statistically significant greater reduction in annual relapse rates at 24 months after initiation of treatment versus pre-study rates. Additionally, a significantly higher percentage of patients remained on COPAXONE(R) for the duration of the study compared to the beta interferons.

Canadian Researchers Produce Its First Embryonic Stem Cell Lines
2005-06-10 03:30:00

Toronto,Canada ( -- Researchers
in Canada have produced that country's first embryonic stem cell lines,
though some scientists say those involved are overstating their claims as to
the kind of cures that could come from the unproven research. A senior scientist
at Mount Sinai Hospital developed the two lines.

Dr. Andras Nagy said he hoped the new lines
"will ultimately bring Canada and the world closer to treating or curing diseases
such as Multiple Sclerosis, Parkinson's Disease, Alzheimer's Disease,
Diabetes and spinal cord injuries."

2005-06-10 16:29:00

The MS clinic called yesterday to give me my next appointment. Its not until November 24th. That'll be my one year check in with them. Here's hoping I have no reason to call them sooner.

Oh, I almost forgot the great news for the summer. We bought an air conditioner to go in the bedroom! So this summer shouldn't be as devastating gross to sleep through. I complained all last summer how awful I felt, so now I have no excuse! Its just one of those small ones that sit in the window, but boy does it ever work! Yay!

Home Sweet Busy Home
2005-06-20 05:20:00

Back from a great trip to Jasper! Although a short and sweet trip, a good one none the less... photos to come soon. We had a full day today taking my dad out for lunch and a friend was ordained this evening. It was a great ceremony and I was sure glad to be there. Much to do before catching up properly in blogland.

Happy Father's Day to all you dad's out there! I hope you had a well deserved day with the ones you love.

Jasper, AB - pic of the lake and dock we hung out on
2005-06-20 17:41:00

Japser AB 6
Originally uploaded by OnlineKim.

Here's a little taste of how beautiful it is in Jasper. There are little docks with muskoka chairs where you could sit and relax. This picture doesn't do the colour of the water justice of couse. It was an aquamarine blue like no other. Amazing place.

12 bucks a day for Sativex
2005-06-21 00:25:00

Its on the shelves to purchase here in Vancouver now. Sativex is the mouth spray that has been approved for sale in Canada under a doctors prescription.

The metered spray is administered under the tongue or inside the cheek. It's derived from extracts of the marijuana plant and is said to taste like peppermint. Many new drugs take time before they're approved on drug benefit plans.

Canada was the first country to approve Sativex in April. A strong proponent of its use at Mount Sinai hospital in Toronto, Dr. Allan Gordon, says it eliminates the stigma associated with smoking pot, and gives patients a reliable dose: "This converts a weed into a medicine," he says Gordon says the price for Sativex is about $120 dollars for 50 doses. And he estimates patients who use it, will be end up spending about $12 a day.

Mmmm... peppermint pot! :)

2005-06-26 17:38:00

I think I'm starting to get used the the 3 day work week. I certainly look forward to my four days off thats for sure! I'm feeling okay energy wise these days as long as I sleep well at night. That really does seem to be my down fall. My back has been less than great over the last month. I'm seeing my massage therapist on a weekly basis, but he hasen't yet made the break through on my back that I'm hoping for. One treatment fixes one problem, and then by the next appintment I have more to complain about that have been shaken out from the last! Does that even make sense!? Does to me :) So, this week's pain has been all lumbar pain, including my tail bone. So, if I wake up in the night with that type of pain, I find it very difficult to recover from it and keep sleeping. My flexor muscles seem to be the culprit... they cease and tighen and then start pulling at the rest of my back. I do a custom stretching/yogish/stengthening routine but its not yet really kicked in. My body feels weak still. A friend of mine whose waiting for a work transfer is going to start swimming with me. Hopefully that will help too.

Let the countdown begin... 11 days until we leave for our Europe trip!! So exciting! I haven't even started to think about what to pack yet.

I forgot to add: Emily? What happened to your blog?

Vitamin D
2005-06-26 20:57:00

Looks like some trials are showing some interesting things about Vitamin
D levels in MS.

From the article:
"We conclude that the vitamin D stores in most MS patients are adequate for their normal bone metabolism. However, lower vitamin D levels during MS relapses than in remission suggest that vitamin D could be involved in the regulation of the clinical disease activity of MS. The optimal serum levels of vitamin D for the regulation of immune responses remain to be determined."

My neuro doc immediately prescribed 800 IU of Vitamin D when I saw him the first time. Were you too? Different amount?

Teva's development of an oral form of Copaxone(R)
2005-06-29 18:25:00

Looks like they're moving ahead to phase III clinical trials for the oral version of Copaxone. Yay, for getting rid of injectables!