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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Tuesday, July 29, 2008
Can't always blame MS right?
Wow, what a whirlwind this last 3 weeks has been. My heart was all wonky and now it's not, so thats been a great smoothed over effect from being on Fingolimod again. I was back at the MS clinic last week and my resting heart rate is back up to it's healthy 62. And I feel normal like I'm not on meds once again like last year. I'm contemplating moving the time I take my pill back to the morning again. I have been taking it at night so any side effects of the drug happen at night, but I don't like that timing. In the morning, I feel like taking a pill is about as normal as brushing my teeth. Regular routine thing. At night, I'm out and about and always have to remember to take it at 9pm and it feel like a more invasive event on my life. I was at a BBQ with friends on Saturday night and my little reminder alarm went off and I had to go get my pill and take it. I just don't like that. I'll see what my clinical trial nurses say about that plan to move it back. I'll likely have to just keep pushing it forward by an hour or two every day over a couple weeks.

And on to fatigue. A new kind of fatigue. And I'm pretty sure it's not MS fatigue. I like to blame any symptom I have on my MS of course but this time around it really was more than that. I worked my tail off prepping my house to be sold and even though friends and family members were helping me, I was going non-stop every day for 2 weeks straight without a days break in between. Even without haivng MS this is exhausting, so maybe the combo really isn't the best when attempting this kind of regiment! Anyways, the house went up all gussied up and sold in 24 hours and now its all done and I can stop living in a staged house. Yay! The crash of fatigue I felt when all this was done was unbelievable and not a kind of fatigue I've felt before. It's taken several days to stop feeling that weight of fatigue and now it's back to work, so onwards I go. Glad it's done!

Wednesday, July 16, 2008
Tovaxin news!
Looks like things are still moving in a positive light for this potential vaccine.

"Opexa Therapeutics, Inc. (NASDAQ:OPXA), a company leading in the development of cell therapies for multiple sclerosis announced today that the Data Safety Monitoring Board (DSMB) overseeing the on-going Phase IIb clinical study of Tovaxin has recommended that the trial continue unmodified. This positive recommendation follows a regularly scheduled meeting of the DSMB in June and is based upon an evaluation of clinical, magnetic resonance imaging (MRI) and safety data that had been recorded for all patients to date.

The TERMS trial (Tovaxin for Early Relapsing Multiple Sclerosis) is nearing completion and the DSMB has two additional scheduled meetings in July and August of this year. Tovaxin is being evaluated in a multi-center, randomized, double blind, placebo controlled study in 150 patients suffering from Relapse Remitting Multiple Sclerosis (RRMS) or Clinically Isolated Syndrome (CIS).

The trial was initiated in the third quarter of 2006 and enrollment was completed in the second quarter of 2007. Dosing was completed in the first quarter of 2008 and currently patients are completing their final weeks 44 and 52 follow-up visits. The primary endpoint being evaluated in this trial is the cumulative number of contrast (gadolinium) enhancing brain lesions (CEL) using MRI, an important and objective measure of MS disease activity. Secondary endpoints include Annualized Relapse Rate (ARR) and additional MRI measurements.

Astral Media Makes $1 Million Commitment to MS Society of Canada

Thanks Astral Media for giving us a bigger voice. Most appreciated.

"Astral Media Inc. and the Multiple Sclerosis Society of Canada today announced a partnership where Astral Media will donate more than $1 million in advertising space to the MS Society. The pledge has been made to help draw attention to the MS Society's work in funding research to end multiple sclerosis and to raise awareness of the most common neurological disease of young Canadians.
"We believe strongly in this campaign and are pleased to play a role in making it successful," said Ian Greenberg, president and CEO of Astral Media. "We are confident that the visibility offered through our various media platforms will help draw attention to this devastating disease which affects so many Canadian men, women and children. It is our goal to support MS researchers in finding the cause and cure to end MS."
The MS Society of Canada will utilize Astral Media's extensive media properties to promote its new endMS capital campaign. The objective of the campaign is to raise $60 million in support of MS research activities in Canada. The sponsored ads direct people to donate via

Laquinimod Phase III trials starting

Another oral med is moving forward and testing against Avonex too.

"Active Biotech and Teva have announced they are enrolling patients on to a pivotal phase-three trial of the oral compound laquinimod.

The Bravo trial will involve approximately 1,200 relapsing-remitting multiple sclerosis patients and will evaluate laquinimod against the currently-available Avonex as well as a placebo.

A second phase-three trial of the compound with 1,000 patients is also underway, Teva reported.

Dr Timothy Vollmer, principal Bravo investigator and medical director at the Rocky Mountain MS Centre in Denver, Colorado, pointed out that all currently-approved multiple sclerosis (MS) treatments are administered by injection or infusion.

He continued: "The ability to provide a safe and effective oral treatment option would be a significant advancement for the treatment of MS."

Thursday, July 3, 2008
A blog? What's a blog!?
Well, well, hello everyone. That was an expected, unplanned blogging break. Life has been interesting. I'm back on Fingolimod. I'm on the extention trial for 3 or 4 years now. I was dosed last Tuesday. I'm on either 1.25mg or 0.50mg. Kinda nice to know I'm on it now for sure! I still think I was on it before though and not on Avonex. Should be interesting to really find that out in about a year or so.

So, dosing after being off meds for 5 weeks seemed to go a bit differently. My heart rate dropped again like it did last year. My resting heart rate was 53. Yikes. So, I was kept under monitor for an extra hour. But then that evening and the next day I had this overwhelming fatigue and heavy chest feeling that was all consuming. My heart rate that day was 56. So, I went back to the hospital the following day and they hooked me up to a holter that I went home wearing for 24 hours just to be sure my heart was all okay. I seriously looked like a cyborg! I had 7 connections all over my chest and now those spots look like crop circles. Blech. Anyways, the cardiologist came and had a listen to my heart and thought that the fatigue was a side effect of the drug and not my heart being too slow. So, I've slowly moved taking my once a day pill to the evening so the fatigue hits when I sleep. Interesting. This was the first time that I actully feel drugged or at least feel a drug in my body. I don't even get MS fatigue as bad as this is.

So hopefully over time that side effect eases off. I guess I won't really know considering I sleep when it kicks in, but one day I'd like to move taking my pill in the morning again. I much perfer that routine over taking a pill at 8pm every night. So, we'll see how the next while goes with being back on meds. Heres hoping for a relapse free summer this year.