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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Friday, June 16, 2006
June 2006 Archive
So very behind... but having some fun in between :)
2006-06-04 11:57:12

This attack is stupid. My right eye seems to be getting the sixth nerve palsy
back again. Not strong like that first time and I can manipulate it based on
the angle that I look at things. So, I'm doing okay, but it warrents a call
back to the MS clinic tomorrow. We'll see. I'm sure they'll want me to take
the steroids. I'm still not convinced I should! But in the mean time.... yesterday
was lobster day at our house! A coworker of mine brings huge amounts from Nova
Scotia every year and they are CHEAP! So, we ordered 2 dozen lobster and 2 dozen
friends and had a great feast. We were all covered in lobster yummyness and
butter. Mmm... it doesn't get any better than that on a Saturday afternoon :)
Oh, and I brought out the chocolate fondue fountain. I think I liked it even
more than the kids did! hhehehehe. And now, Sunday is rest and relaxations and
knitting day. It's almost 1pm and I'm still in PJ's! Now thats a good way to
spend the day I say.

Cryptovirus - a contributing virus?

2006-06-04 13:00:02

about viruses that are impacting Nuerological conditions including
MS. I haven't heard of this one before... anyone had it or heard of it? "According
to the company, "This previously undetected virus appears to be of significant
importance to researchers looking for a cure to Multiple Sclerosis and many
other neurological illnesses. Antibodies to the newly discovered virus were
found in the cerebrospinal fluid and blood of over 90 percent of the patients
tested with Multiple Sclerosis. It is believed that this newly discovered virus
may prove to be responsible for a host of neurological disorders. Tests are
currently being prepared for tissue samples of lesions within the brains of
patients with Multiple Sclerosis. This will be the final round of tests before
approaching the FDA for approval of the diagnostic tests."

BG-12 new oral drug in phase II trials

2006-06-04 13:04:55

phase II for Biogen Idecs multiple sclerosis drug - Pharmaceutical Business
Biogen is making another drug, this time an oral drug. "This phase
II multi-center, double-blind, placebo-controlled, dose-ranging study enrolled
257 patients at sites in 10 countries in Europe. Patients were randomized to
receive placebo or BG-12 at 120mg, 360mg, or 720mg per day for six months. The
patient group treated with 720mg of BG-12 per day had a 69% reduction in the
mean number of gadolinium-enhancing lesions versus placebo as measured monthly
from weeks 12 to 24 of the study. The 720mg dose group also had a 48% reduction
in newly enlarging T2-hyperintense lesions. BG-12 therapy was also associated
with a trend towards reduction in relapse rate. "

2006 MS trends and insights from the AJNR

2006-06-04 19:31:04

I just have to post this site. It's a really good total overview of current
MS facts that I think anyone newly diagnosed would feel comfy reading and learning
from. This is an article posted in the American Journal of Neuroradiology in
May 2006. And to recap: Most MS
patients (85%) experience a relapsing-remitting (RRMS) course of
the disease characterized by the episodic onset of symptoms followed
by residual deficits or by a full recovery within a few weeks, especially
in the early stage of the disease. Most definitions of a relapse require that
new symptoms or signs be present for at least 24 hours and that they
not be associated with a fever, because elevated body temperature
can unmask subclinical lesions. Approximately 20% of patients with
RRMS will remain clinically stable or nearly stable for at least
2 decades (benign MS). Specifically, benign MS is when a patient
remains fully functional in all neurologic systems 15 years after
disease onset. Within 25 years, however, most untreated RRMS patients
will evolve into a secondary progressive phase (SPMS) characterized
by a chronic and steady increase of physical symptoms and disability.
Approximately 10%–15% of MS patients experience a primary progressive
(PPMS) course. PPMS differs from the RRMS subtype in that it affects
both men and women at equal rates, occurs in older individuals, exhibits
lower levels of inflammatory markers and myelopathic features, and
is unresponsive to immunomodulatory agents. Progressive relapsing
MS, which is defined as progressive disease from onset, with clear
acute relapses, with or without recovery, and with periods between
relapses characterized by continuing progression is quite uncommon.
Although MS is not a fatal disease, very rarely it may exhibit a
malignant course leading to significant disability in multiple neurologic
systems or death within a short time after disease onset.

Tysabri FDA Approval Under Special Distribution Program For Multiple Sclerosis

2006-06-05 18:22:32

FDA Approval Under Special Distribution Program For Multiple Sclerosis
FDA has approved the resumption of Tysabri (natalizumab), a drug for patients
with a relapsing form of multiple sclerosis, under a special restricted distribution
program. The main points on it's use: -- Only prescribers, infusion centers
and pharmacies registered in the TOUCH program can prescribe and distribute
the drug. -- Only patients who are enrolled in the program may receive the drug
-- MRI scans of patients wanting to enter the program must be obtained before
they are enrolled so that future PML symptoms can be distinguished from future
MS symptoms -- Enrolled patients must be evaluated 3 and 6 months after treatment
begins, and then every 6 months thereafter. -- Each patient's status must be
reported to Biogen Idec. Bioden Idec makes Tysabri and Elan distributes it.
For more information on the TOUCH Prescribing Progam call 1-800-456-2255

I am here, I promise!

2006-06-13 19:01:25

Wow, another hectic fun week! So, where did I leave off? Right. I went back
to the MS clinic and saw the Neuro Opthamologist. Got to see a great student
first off. I hope he goes into this field. He was very easy to talk to and a
great listener. He reiterated all my comments to Dr. Anderson perfectly. Anyways,
I do have the sixth nerve palsy back and no I didn't take any steroids. My doc
says it is a minor sixth nerve palsy at this point and the fact that I've learned
to manipulate it that keeps me functional meant no steroids. He doesn't seem
to be a big fan of them. He didn't think I needed them 2 years ago either when
the double vision was full strength. So, I see him again next Tuesday to make
sure it hasen't increased it's scope of the double images. I'm doing pretty
well as long as I keep things I want to look at to the left of me. People at
work don't even know it's happening, so that makes me happy :) Lasy Friday I
flew to Calgary to tag along on one of Tods business trips. I accomplished a
lot I think! On Friday eve we stayed in Calgary and I got to hang out with Heather
from Lectio! It was a fabulous time of gabbing
and yacking and sharing stories over dessert and coffee. I sure wish she lived
locally! We'd have a blast! We joked about Tod being the only normal one at
the table :) Have a listen to the lastest podcast
to hear about what we chatted about! Of course I didn't think to get Tod's recording
equipment that we use for podcasting until after Heather was gone! Duh! Next
time! On Saturday morning we drove to Kananaskis. Beautiful, peaceful place
to go and relax. I have a lot of knitting to catch up on so while Tod worked,
I lazied around and caught on knitting :) And my best friend Denise was able
to drive up so we could hang out! We drove over to Banff and went for dinner
at the fondue restaurant! I love that place! It's such a unique place to dine.
I love it. We had a chance to wander around in the village too, so that was
a great day. I flew home Monday afternoon and had a chance to reacquaint myself
with the cats and not so little kittens. All 4 crowded me at the front door
trying to get to me first. It's always nice to come home. Tod isn't home until
tomorrow night afternoon though, so the house will be properly full again.

If you could ask the MS Society of Canada a question, what would it be?

2006-06-13 19:10:26

Yup, the MS Society of Canada
is allowing Tod and I to have a great chat for the MS podcast about where things
are at in their world! So, I open the forum to you. What do you want
to know? What do you want to ask?
Some questions I have are of course
surrounding the latest and greatest in research. As well as how and what new
ideas are there in raising money to beat out all the other heavy hitting charities.
I need to have your questions and comments by JUNE 25. Voice comments are great
(1-206-350-MSMS), or you can leave comments here or email me directly. You can
use this new cool thing that Tod set up that allows you to just record your
own voice and it sends it right to us! Here's
the link to do that.

MBP8298 Phase II and long-term follow-up data

2006-06-13 19:21:46

Good news coming in on this drug for PPMS. I think this about says it all:
The results show that MBP8298 safely delayed disease progression for five years
in progressive MS patients with HLA-DR2 or HLA-DR4 immune response genes. Treatment
and follow-up of patients demonstrated that patients in this DR2 and DR4 responder
group, who comprise up to 75% of MS patients, had a median time to disease progression
of 78 months as compared to 18 months for patients who received placebo. "Our
data suggest that we can safely delay progression of MS in an identified responder
group of patients for extended periods of time," said Ingrid Catz, co-inventor
of MBP8298 and co-author of the phase II study. "Recognizing the high variability
of the disease in MS patients, the clinical and mechanistic evidence gathered
to date supports the rationale of targeting patients with the HLA-DR2 or HLA-DR4
immune response gene. The identification of this responder group will improve
efficiency toward the achievement of objectives in future clinical trials with
MBP8298, while the potential for clinical responses in patients with other HLA
haplotypes is further explored." And I think the understatement of this article!:
"Having a drug that treats progressive MS would be very well received."

Sharp Pains?

2006-06-17 09:10:57

Anyone have random sharp pains in a limb? Pamela over at the Looking
Forward with MS blog
is looking for any others who have experienced this.
If you have any insight, I'm sure she'd love to hear from you.

Happy Fathers Day

2006-06-18 13:15:56

Happy Fathers day to all your dads out there. Hope your having a good, relaxing day with family. Tod and I are off to my dads with Salmon! Mmmmm fresh caught from the Skeena River Sockeye salmon. I have a special native rub and I think it's going to be a great meal that for once, my dad won't be cooking! He's a fabulous cook, so it'll be fun to see if I can wow him for once ;)