Mandatory Rest Period

I know, I know! It's been ages!

2011-11-03T16:12:00.000-07:00

I really haven't forgot about this little blog of mine! So much was going on in the last year with being a full time student that I really was just in survival mode to get through it. It was the most rewarding and thrilling time of my life. I love being a student, and love being a nursing student even more than anything I've done in my life.
And now I'm moving into a new job... not a nurse yet! I have 3 more years of school to get through. But now I'm pregnant! So, my new job of mommy will start in and around March :) I couldn't be happier! Actually, truth be told, I'm much happier now in the 2nd trimester. The nausea and vomitting has stopped! Yay! I feel a little more human again :)
Now, on to the real reason for this blog... my MS. About 2 months into my r0egnancy I started having an attack. The numbness and burning starting creepy up from the bottom of my feet and now sits at about my ribs. My whole baby bump is numb! My stability when I walk is a bit sketchy this time around with this attack. I'm really hoping once I get to the third trimester my neurologist will be correct and this attack will start to recede. I'd like that.
So for anyone who might have my url in their feeds still, thanks for coming back around! I've seen a lot of good stuff in the media lately on MS that I'd like to post about.

So much change!

2010-09-02T14:49:00.000-07:00

Wow! What a whirlwind couple of months. Here's the short story.

First, I got accepted to nursing school! I'll be doing a 4 year bachelor of science in nursing program with will make me a Registered Nurse by the end of it all. It's exciting, daunting, freeky, and something i'm so happy to finally be in the right place in my life to do it.

Secondly, I quit my job! I was there for almost 11 years so it was tough saying goodbye to all the great people and leave behind a completely different career.

Thirdly, I moved to a fantastic townhouse three weeks ago. It has all the space we need and I have my new student room set up. I'm really done with boxes though now. Really done. We moved in a heat wave and I was crashing every day from the heat. Bad timing!!

Next week I go see my neurologist for my next check in for my clinical trial drug FTY720 aka Fingolimod and now apparent Gilenia. I'm a bit leary about staying on the pill considering how I react to getting a cold. It's one thing to be able to call in sick at work but an entirely different thing for school to be sick for 14 days non stop. I wonder if there's a better fit for my changing life now?

And sadly one of my beloved cats is having some health challenges and I'm waiting for final results to see how much longer I'll have the privilege to know him. He doesn't act sick, but we've found a lot of stuff going on inside him. :(

It's getting fancy that little FTY720 pill!

2010-07-06T10:58:00.000-07:00

Looks like Novartis is getting ready to sell the little gem of a pill FTY720 now. My new bottle all of sudden has fancy looking pills!

You'll all be able to take FTY720 now! No more injections!

2010-06-10T22:54:00.000-07:00

Novartis did it! They got FDA approval for FTY720 (aka Fingolimod) now known as Gilenia! Honestly, having been on this drug for about 3 years now... I can't wait for all of you to enjoy it as I have. Bye bye injections if you want!

An update from my last post. My heart rate dropped to 58 and exactly one week later, all those side effects ended. Phew. It's good to be back feeling more normal!

So, who is going to try to switch when its fully available?

Back on Fingolimod!

2010-05-31T11:40:00.000-07:00

Wow, hospitals have good wifi!! I'm at UBC right now being monitored while I take my first dose of Fingolimod again. So far so good. It hasen't been in me long enough for the heart rate drop, so we'll see how that goes around hour 3 or 4. Here's where I am for the next 6 hours:

Looks comfy eh? And this is the ECG contact thingy that are all over me. Legs, arms, chest mostly. I'll wear them all day as they do ECG's over the day.

So, I started this morning with a resting heart rate of 68. We'll see where it gets too. I'm a bit freaked out his time around as I know the temporary side effect of my heart rate dropping will be hitting me in a couple hours. And now I have a fresh new bottle of Fingolimod.

Not sick this time!

2010-05-03T15:13:00.000-07:00

Yay! I just got back from Maui and I didn't get sick this time! I haven't been on FTY720 (Fingolimod) for a little while now and I hate to say it, but I think it helped having this drug vacation. I did put in the phone call today to get back on it though. I don't really want to tempt fate.

My trip was filled with amazing things! I got to fulfill a lifelong dream of seeing Bottlenose dolphins in the wild!

And then, I was out snorkeling and I could hear them calling. But I wasen't with it enough to raise my head out of the water. If I had, I would have seen a pod of them swimming past me!! Instead I happily followed a turtle and an eel :)

I did some amazing snorkeling. Maui lived up to it's reputation thats for sure!

The humpback whales were still in the are too and I got to see some babies practicing for their journey up to Alaska.

And of course the scenery everywhere was amazing!

And the greatest gift was my new niece was born: Samantha Rae

Other things in life

2010-03-29T15:17:00.001-07:00

Sadie had to have surgery. She's 13 and it was pretty rough on her. She had a jumbo lump removed and it turned out to be benign. Phew.

Okay, I'll say it

2010-03-29T15:12:00.001-07:00

I miss the Olympics!!!

This was me at a medal ceremony one night. That was soooo great!

And the a great concert broke out!

And I went to a curling match!

There's my fav little guy Quatchi :)

They sure made my home town look lovely!

A little longer drug vacation

2010-03-26T13:00:00.000-07:00

After seeing my clinical trial folks last week it was decided that I'll stay off Fingolimod until I come back from my trip to Maui in late April. Once I get back I'll go back on the drug. It's questionable at this point if I will have to do the whole 6 hour under monitor appointment for the first dose. It seems like they are going to try to change that. I'll find out in May. The cool thing is I'm still in the clinical trial I'm just not taking the drug for right now. So I still have to record everything. Pretty cool. I wasent' expecting it to go this way so I'm happy for the little break away from it.

And fundraising for the MS society is going great so far! I just reached $1205.00 an hour ago! I'm thinking about having a cupcake sale in a couple weeks at work.

Let the fundraising begin!

2010-03-15T14:18:00.001-07:00

Although I won't be in town for the MS walk this year, I did decide to raise money anyways! And an amazing twist of generosity has toughed me this year.

Here is my link to donate if you can!
http://msofs.mssociety.ca/2010WALK/Sponsor.aspx?&PID=1146132&L=2

AND BIG NEWS! The McIntyre family have generously donated playoff
tickets to my fundraising! So here are the details if you want to win
them:

ANY donations of $50.00 or more will be entered into a raffle for the tickets. The tickets details are:

Canuck Playoff Tickets!!
Round 1 Game 2
Section 112 Row 14
Seats 105 and 106
Game will be between April 16 to 18th

All donations must be in by April 14th. The draw for the tickets will happen at 5PM.
Thank you Dan and Nancy for your generosity!

A clearer head prevails

2010-03-15T14:11:00.000-07:00

Okay, so the bronchitis finally ended, the face rash is almost over and I have the approval to go back on Fingolimod. I just have to book it. My decision to go back on came after my head cleared from all the coughing. A head cold, flu or a rash is FAR better than more lesions on my myelin. That is afterall why I'm treating my MS with this drug. No drug will be perfect. I know that. I could take Avonex and have a "flu-like" side effects every week like I see some folks talking about. So, we'll see how it goes being re-dosed. I'm sure I'll have to do the 6 hour monitoring day with the cool heart nurse Holly. She's cool to hang out with at least!

Weird stuff

2010-03-08T15:02:00.000-08:00

Weird stuff has been happening to me. And not MS weird. Well, okay sorta MS weird. It's always MS's fault right? So, I got a sinus head cold thingy for three weeks in January. Finally kicked that only to get bronchitis 3 weeks later. The following day the bronchitis kicked in I got a weird rash that started under my chin and slowly started going up my face and all around my neck. Itchy and annoying to say the least.

So, I called the clinical trial nurses. They had me come in to see Dr. Traboulsee that afternoon. They took pictures of the rash to send to Novartis and promptly took me off Fingolimod! Seems like my body was just too overloaded with viruses so they are being cautious and put me on a drug vacation.

So, now it's been a week or so... and my skin looks lovely again and the bronchitis is gone. And yet... I'm stalling calling in to reschedule going back on Fingolimod. I'm a bit... scared. Hmph. And going back on means the dreaded fatigue and heart rate drop. That was a rough go last time around. What to do... what to do...

Is anyone doing the MS Walk this April in Vancouver?

2010-02-02T12:45:00.000-08:00

I'm going to be out of town when the walk is happening. :( A Maui trip just got booked! Is anyone doing the walk here locally that I could team up with to direct all my fundraising to? Get in touch with me at restperiod at gmail dot com if your interested.

Employment and MS - a survey for World MS Day 2010

2010-01-29T15:32:00.000-08:00

I was sent this from the lovely folks at MSIF and thought I would share it.

Dear supporter

In preparation for World MS Day 2010 MSIF is doing a study on how MS impacts on employment of people with MS and their carers.

If you or someone you know has MS, please take this short survey - http://www.surveymonkey.com/s.aspx?sm=LiB_2bH0VtHsS0YCtcG46L1g_3d_3d, the results of which will be released on World MS Day on 26 May 2010. The survey will be available in ten languages when the new World MS Day website is launched next month.

Join the Global Movement. End MS!

Peer Baneke
Chief Executive
MSIF

And I have to say this

2010-01-29T15:24:00.000-08:00

I'm sick of hearing about CCSVI. I love, love, love the idea that there could be possibilities there, but there isn't the hard, cold facts from science to back it up *yet*. I'm waiting for that to happen. For sure. Time will tell.

Well, well, well...

2010-01-29T15:07:00.000-08:00

That was an unexpected break from blogging. I don't really know why. But hello! I'm trying to catch up! :)
I guess I have been a bit busy since the christmas season started up in full force. I was in Palm Springs! We went for a cool hike in the desert.

And then drove to San Diego and went to the zoo! We did a behind the scenes tour and I got to feed giraffes and camels! Way cool and so worth the big bucks to do it!

Then back to reality and of course Westjet once again gave me a head cold! ARgh! This one too 3 weeks and a round of antibiotics to kick. I'm finally feeling a bit better now. So, in true form I went and got my hair coloured back to blonde and my hairdresser went a little crazy with the curling iron for fun.

All in all, my MS has been pretty good lately. A good smattering of fatigue here and there, but nothing too big to complain about. I guess my daily little pill called Fingolimod continues to do it's thing. I've seen on other blogs that they have gone for FDA approval too. Good stuff. I hope all of you on injections can join me in the land of the pill and no side effects soon!

Officially unblinded! I am on Fingolimod!

2009-12-07T11:08:00.000-08:00

And I was wrong! My clinical trial nurse called me the other day to tell me what I have been officially taking these past couple of years. I've been on the lower dose of Fingolimod (FTY720) 0.5mg! I was wrong! I thought with my heart rate drop last year after re-dosing that I had to be on the higher dose of 1.25mg! I pretty much figured I wasen't on the Avonex as I didn't get any injection reactions or typical side effects. So, I really did inject myself with saline IM for one year in the name of science! hahah. That makes me laugh :)

So, all patients are being moved to the lower dose and I don't have to do anything, just keep taking the pill. It sounded like they are looking at FDA approvals next year perhaps, but I'll be able to stay on the trial until Novartis says no more. Very cool. I've enjoyed the great care I've had from all my nurses at UBC and all the doctors I see are great.

What are you looking at?

2009-12-01T10:17:00.001-08:00

Teenage Obesity and MS

2009-11-23T16:40:00.000-08:00

I'm a bit behind on whats been happening in the news... but this one kinda stood out to me considering I was a bit of a chunky monkey growing up.

"Researchers have found that teenage obesity may make women more likely to develop multiple sclerosis later in life.

The study comes from the Harvard School of Public Health and tracks 40 years in the lives of 238,000 women. It found that the women who were obese at 18 years old were twice as likely to develop MS. The findings were published in the medical journal Neurology.

Out of the women studied, 593 developed the condition, which breaks down nerve fibers, causing neurological deterioration.

Oddly enough, neither obesity in childhood nor obesity in adulthood showed any correlation with the condition, according to the report.

“Our results suggest that weight during adolescence, rather than childhood or adulthood, is critical in determining the risk of MS,” study author Kassandra Munger, ScD, told BBC News. “There’s a lot of research supporting the idea that adolescence may be an important time for development of disease, so what we have found is consistent with that.”

According to BBC News, researchers believe that the connection between teen obesity and MS may have something to do with vitamin D levels. Some research has indicated that high levels of vitamin D can reduce the risk of developing MS. Fatty tissue, however, often reduces a person’s vitamin D levels.

“Teaching and practicing obesity prevention from the start - but especially during teenage years - may be an important step in reducing the risk of MS later in life for women,” Munger told the BBC."

MS Society of Canada announces request for research operating grants related to CCSVI & MS

2009-11-23T15:54:00.000-08:00

That didn't take long! Go MS Society of Canada!

FOR IMMEDIATE RELEASE
MS Society of Canada announces request for research operating grants related to CCSVI and MS

Toronto, ON – November 23, 2009 – The Multiple Sclerosis Society of Canada announced it will request research operating grants related to chronic cerebrospinal venous insufficiency (CCSVI) and MS.

A recent study released by Dr. Paulo Zamboni, University of Ferrara, Italy, describes CCSVI as a disruption of blood flow in which the venous system is not able to efficiently remove blood from the central nervous system resulting in increased pressure in the veins of the brain and spinal cord which in turn results in damage to these areas.

“These early results are encouraging and show that this warrants more study,” said Yves Savoie, MS Society President and CEO. “This is truly a new avenue to explore in MS research, and we want to be a part of furthering this investigation.”

The MS Society of Canada will issue an invitation for research operating grant proposals on CCSVI related to multiple sclerosis from qualified investigators based in Canadian institutions. Proposals will be evaluated for their scientific merit and relevance to the field of MS.

The competition will open on December 9, 2009, and the deadline for applications will be January 22, 2010.

“There has been tremendous interest and excitement about this study from people with MS, supporters, volunteers and staff across the country. While we acknowledge that the concept of CCSVI as a cause of MS needs to be replicated and validated in larger well-designed studies, the Society looks forward to contributing to this body of work,” said Savoie.

While excited about the potential of the CCSVI study, the findings are preliminary. Thus the MS Society advises that while further research is underway people follow their physician's recommendations and continue their current course of therapies.

The CCSVI news

2009-11-22T22:10:00.001-08:00

Okay, so I've spent all weekend going over all the info on The Liberation Treatment or CCSVI. I think the most profound thing I heard in the show on W5 was this. A woman said that all of a sudden she could feel her hands and her legs again. They worked again, but she could actually FEEL them again after having the treatment. The thought of that brings tears to my eyes. For a moment, just a moment, I put myself in her shoes. And I seriously cannot even fathom what that would have felt like. And really, I don't like to go there to be honest. I've spent a lot of heartache coming to terms with my MS and so until that should ever be an option for me to have that kind of release from it, I just can't go there. I want to. But that hope long ago faded with the acceptance of my life with MS. For life. So until those trials really progress to a point of making it a viable treatment option, I think I need to stay where I am. Taking my little Fingolimod pill every morning. But you can be certain, that if UBC gets CCSVI in the trail phase, I'll be the first to get my jugular vein scanned to see if I have the narrowing and the iron accumulating!!

*** Quick update if you want to participate in Dr. Haackes research. All guidelines for sending him your scan are posted here: http://www.ms-mri.com/

W-Five tonight at 7 with new MS discovery - CCSVI

2009-11-21T15:31:00.000-08:00

I'm being notified about this show tonight at 7PM on CTV will be on something big for MS. FYI!

And here's what its about:

Relief for patients

One of those patients was Buffalo resident Kevin Lipp. Lipp had MS for over a decade, and as part of the study, discovered he had five blocked veins in his neck. After undergoing the Liberation Treatment 10 months ago, he says he hasn't had a single new MS attack.

Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again. Rather, it seems to stop the development of further MS attacks, and in some cases, improves movement and decreases the debilitating fatigue that are the hallmarks of MS.

The foundation that has sponsored Zamboni's research, the Hilarescere Foundation, also urges cautious restraint.

"We can't give the illusion to patients that this is a guaranteed treatment and it is easy. This is not right. And we have never done this," says Hilarescere President Fabio Roversi-Monaco. "We don't say this is a cure for M.S. We only say that research is advancing, and there is encouraging data but we are waiting for more conclusions."

Dr. Zivadinov in Buffalo is now starting a new study, recruiting 1,600 adults and 100 children, half of them MS patients. He plans to use ultrasound and MRI scans to confirm if those with MS also have CCSVI and if their family members have the abnormalities too.

Prof. Mark Haake, a neuro-imaging scientist at McMaster University and Wayne State University in Detroit is also intrigued by Zamboni's findings. He has long been seeing iron deposits in the brains of MS patients using a specialized MRI analysis called SWI - specific weighted imaging. When he saw Zamboni's initial publications, he immediately contacted the Italian doctor and began collaborating.

Population studies under way

Haake too is initiating a study, asking neurological centres across North America and Europe to take some extra MRI scans of the neck and upper chest of MS patients. The scans can then be electronically sent to his research team for analysis. He believes this grassroots approach could spur larger and more in depth studies. He's hoping he can engage MS specialists and vascular surgeons, interventional radiologist around the world to study the theory and then move to diagnosing and treating MS patients quickly.

"I think patients do play a role, because there are millions and millions of dollars donated to MS Societies and a lot of money set aside by the government to study MS research and right now, 99.9 per cent of that money goes somewhere else," he told W5.

"So the patients need to speak up and say 'We want something like this investigated, at least at an early stage, to see if there is credence to this theory.' Even if it is 10 or 20 per cent of these people who can be helped, that needs to be investigated," says Haacke.

Haake's research is being done with no funding; he's unwilling to wait the nine months to a year needed to get formal research funding applications approved. Urgency, he says, is needed in finding the answer to the question of whether Dr. Zamboni is right.

"Certainly, I continue my battle because I am fully convinced that this is the right thing for the patient," he says.

The MS Societies of Canada and the U.S. are reticent to support Zamboni's theories. They maintain that: "Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS... It is still not clear whether relieving venous obstructions would be beneficial."

Interest in CCSVI growing

But CCSVI has become a subject of intense interest among MS patients who are texting and emailing details of Zamboni's work, locating the few centres around the world that have started to work on studies on CCSVI and the Liberation Treatment.

Zamboni says every day, MS patients hear about his theory and either write, email or call him asking for treatment he can't yet provide. Still, some surgeons in the U.S. are now offering the surgery Zamboni's team has pioneered.

Jeff Beal, an L.A-based, Emmy-Award-winning musical director has already paid to have the surgery procedure. After he was diagnosed with MS five years ago, he was left unable to work a full day and worrying he would spend the rest of his life in a wheelchair. Unable to come to terms with the diagnosis, his wife, Joan, set to find new treatments and eventually came upon Zamboni's work. Unable to get her husband treated in Italy, she convinced a Californian vascular surgeon who already performs similar surgery on leg veins to look at Zamboni's work and test Jeff for CCSVI. Jeff was diagnosed with two blocked jugular veins and treated with the Liberation Treatment. (with a slightly different procedure than the italan one..using Stents) He now says he has much more energy and none of the chronic fatigue that used to limit his activity.

"I reached what I would call sort of a higher plateau, in the sense of the most debilitating symptom, which is the fatigue. So, I still have fatigue every day, I still battle it; it's still one of my symptoms. But in terms of the total reservoir of energy, it's much greater than it used to be. And that's a huge gift, especially to my family," Beal told W5.

His wife Joan was delighted with the surgery's results.

"Suddenly, he's helping Henry with his homework and he's playing trumpet duets with Henry and he's awake. And there's this presence in the house that hadn't been there for two years," she said.

Joan has now become a "cheerleader" of Zamboni's work on MS chat sites, urging other patients to show their neurologists the material being published by the Italian team and to ask them to consider setting up a study in other MS clinics.

Among all of Zamboni's success stories and the patients who sing his praises is his wife Elena. Her MS caused her to lose her vision for a time and develop what she called "violent" attacks. She had difficulty walking and was losing her balance and feared a life in a wheelchair unable to care for herself. Elena became one of her husband's first ultrasound test patients and was found to have a complete closure of the azygos vein in her central chest. She was one of the first to be liberated almost three years ago. After having regular debilitating MS attacks for nearly a decade before, Elena has been symptom-free ever since. An elegant, intelligent woman, she now has a quick walk, with no sign of disability. Her husband couldn't be happier.

"What I think is this is probably the best prize of the research," says Zamboni.

5 years ago...

2009-11-10T10:29:00.000-08:00

Well, I didn't post it here, but I did a little solitary celebration on my own. October 26th was my 5 year anniversary since being diagnosed! 5 years people!! How did 5 years just go by!?

When I think about my life back then and what it was like living with double vision and all the other unhealthy ways I was living, I'm certainly glad to be where I am today! I may not have double vision anymore (or any lasting eye issues from it) but I do know my MS is different 5 years later. I have a little more numbness in my lower legs. My muscles on my right side still have repaired fully from my last attack so who knows if this is the new me in that regard. And my fatigue level is just... different. A little more pronounced?

But ultimately, I feel far healthier regardless! I feel physically well overall and maybe thats because I have been able to put myself first in my life and stop when I need to and ask for help when I should. Okay, not always, but in a much more balanced way now. I guess its just a part of acceptance of my disease in my body and that it's here to stay. I could resent it, but I choose to embrace it instead. It's a much happier life that way for me.

One more move!

2009-11-10T10:24:00.001-08:00

Just a quick update... you can still reach me at www.restperiod.ca. I have moved the site officially to blogspot and that direct link is Http://mandatoryrestperiod.blogspot.com

Not quite diagnosed yet?

2009-10-14T09:08:00.000-07:00

Copaxone has a treatment solution for you now. Good on them for getting to you sooner rather than later! We all know the diagnosing cycle can be a lengthy one. Man, I was lucky. 3 months I believe and I was diagnosed. And not all that many doctors in comparison to what I've heard from many of you. Anyways, have a read.

"The researchers found that the treatment group had a 45 percent reduced risk of developing MS during the course of the study compared with the placebo group. In addition, 24.7 percent of the treatment group had a second clinical attack compared to 42.9 percent of the placebo group. The length of time for 25 percent of patients to develop MS was extended from 336 days for the control group to 722 days for the treatment group. Injection-site and post-injection reactions were more common in the treatment group as compared to placebo group.

"Early treatment with glatiramer acetate is efficacious in delaying conversion to clinically definite MS in patients presenting with clinically isolated syndrome and brain lesions detected by MRI," the authors conclude."

Happy Thanksgiving!

2009-10-11T09:18:00.000-07:00

Happy Thanksgiving everyone! I hope you're all having good turkey and family time. I'm done one turkey dinner and the next one is tonight! Mmmmm... I need to go make cranberry sauce now.

2009-10-09T17:39:00.000-07:00

I got home from work today and this is what it all looked like:

Savoy was catching on blogs

Flick wanted to go get some food (I think)

But he was blocked by sleeping Lady Sadie

But she woke up with that pleading look "take me out"

So she went to get ready

And we left our condo..ohhh look out, thats where the skunks hang out!

To the park for a good shake

And err... the necessary...

Checking out the park

And back home

Sadie just turned 13 last week, so walks are pretty slow. And not so long anymore.

A sneak peak

2009-10-09T17:30:00.000-07:00

Bed time at my full house these days...

Starts with a yawn

And a stretch right to the tippy toes

Then some settling in

And more

And some protective action for the important things in life

And everyones comfy!

And just because

2009-10-01T14:41:00.000-07:00

My nephew has now perfectly mastered the "Cabbage Patch" look:

And I still take lots of photos my pets :) This is where Sadie chooses to sit when we take her out on a boat ride.

Fingolimod - FTY720 news

2009-10-01T14:39:00.001-07:00

Of course I have to post this news right away. I take this lovely little pill! :)

"According to Novartis, the study met its primary and secondary endpoints for both the 0.5 mg and 1.25 mg doses, with no significant difference in efficacy between doses. The results showed that FTY720 reduced the relapse rate by 54% for the 0.5 mg dose and 60% for the 1.25 mg dose, compared with placebo. In addition, it reduced the progression of disability by 30% for patients on 0.5 mg and 32% for those on 1.25 mg, compared with placebo over two years."

Blood test could predict severity of your MS

2009-10-01T14:35:00.000-07:00

Hmmmm... this opens up a lot of questions for me. Would you really want to know? Would there be a better treatment you would choose knowing the course of your disease? Hmph. The drugs on the market now seem to have such similar efficacy rates, so really? Does it matter? Have a read for yourself and leave a comment with your thoughts!

"Research has identified a biological marker in blood that seems linked to patients’ prognosis after the first MS attack, paving the way for a new approach to assessing how the illness will progress. If a blood test based on the biomarker can be validated, it could be used with MRI scans and other methods to improve diagnosis.

Patients whose MS is thought likely to progress quickly could be started swiftly on therapies that can reduce the frequency and severity of attacks, while those at lower risk could be spared medication they do not need immediately. More accurate ways of assessing prognosis could also help to prepare patients for what they should expect in the future, removing the uncertainty that can be a distressing feature of the disease.

The research, led by Rachel Farrell, of the Institute of Neurology at University College London, and funded by the MS Society, also offers new insights into the biology of MS that could improve understanding of the causes of the condition."

Delinquent

2009-09-29T16:08:00.000-07:00

Yup, I'll be the first to admit it! I'm a delinquent blogger for sure! Perhaps this is the 5 year lull one feels? Hmmm.... Anyhoooo thought I would post a quickie update if anyone still reads ;)

I was at the MS clinic a couple weeks ago for another clinical trial appointment. My newest EDSS score is 1.5 which was a bit blech to see even though I know that's low. I've not had any attacks recently but I am not healing well. I had scrap on my leg and 7 weeks later it was still there and not healing. Weird. An affect from the Fingolimod no doubt. My trial continues though and I keep taking my little pill every morning. Still no real side effects that I can come up with. I so hope the rest of you can go on this pill soon! The last rumours I saw was perhaps attempting FDA approval at the end of this year. I hope I can stay on the trial if Novartis does get approval!

And today I'm happy to be three weeks out from moving day. It's so much easier to be almost fully unpacked and away from all the craziness that moving is. My fatigue and physical pain was at a pretty manageable point throughout. I was pretty happy about that. And I've been taking my Baclofen at night and thats AWESOME! My lumbar doesn't keep me awake all night and I actually sleep! Makes me a happy camper in the mornings.

Yoga

2009-09-14T16:25:00.000-07:00

So, I'm thinking about getting into yoga now that my move is all done. Does anyone have any suggestions on what "kind" to look for and weather I should talk to the instructor about my MS? I know there are lots of genres but thats about all I know. Oh, and I know that Bikrams yoga, that one in the heat, is NOT for me :)

Extavia = Betaseron

2009-08-24T13:47:00.000-07:00

Interesting. Novartis can now sell a version of Betaseron that they're calling Extavia. I guess the days are now changing where we can't just ask an MS'er which of the 4 options of drugs (CRAB) are you on?

"Novartis’s copy of Betaseron is called Extavia. It’s the exact same drug, with a different name. Novartis got the rights to launch a copy of Betaseron through a complicated deal stemming from its 2006 acquisition of Chiron. Novartis has already started selling Extavia in Europe, and is paying Bayer royalties on the sales.

Both Betaseron and Extavia are known by the generic name interferon beta-1b. Interferon beta-1b is a widely used injectible drug, prescribed to reduce the frequency of clinical exacerbations in relapsing forms of MS."

5 Years Later

2009-08-17T20:52:00.001-07:00

Well, I almost missed it! It was 5 years ago last week on August 13th that my double vision kicked in while I was at work. This was my diagnosing symptom. 5 years! If you click over on the right there, you can see my very first posting I did a few months later about that time in my life.

A lot has changed. Including my eyes! My vision is better than before the double vision! Weird to have healed to be stronger than before getting all gimpy. My health today is pretty damn good. I changed many things in my life (things I won't be going into here, email me if you like) and now I can work more, I can hike 7kms with or without numb legs and I'm on the clinical trial drug Fingolimod that seems to be doing what it's intended to do. I even had the opportunity to overcome my needle phobia on the clinical trial as I injected "Avonex" for the first year of the clinical trial. Okay, it turned out to be sugar water in those needles, but still. Grateful to not faint every time I give blood!

So as much as I like to sometimes hate on my MS, for the most part I'm pretty damn happy with where I'm at in my life and I'm no longer as afraid as I used to be to try new things for fear my MS will make me fail.

GIFT15, puts MS into remission by suppressing the immune response

2009-08-17T15:39:00.000-07:00

Closer and closer they keep getting! YAY! Pretty exciting news coming out of Canada no less! Yay! Today, I wish I was a mouse. Oh, and a mouse in the early stages of the disease.

The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.

GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.

GIFT15 is composed of two proteins, GSM-CSF and interleukin-15, fused together artificially in the lab. Under normal circumstances, the individual proteins usually act to stimulate the immune system, but in their fused form, the equation reverses itself.

"You know those mythical animals that have the head of an eagle and the body of a lion? They're called chimeras. In a lyrical sense, that's what we've created," said Galipeau, a world-renowned expert in cell regeneration affiliated with the Segal Cancer Centre at the Jewish General and McGill's Centre for Translational Research. "GIFT15 is a new protein hormone composed of two distinct proteins, and when they're stuck together they lead to a completely unexpected biological effect."

This effect, explained Galipeau, converts B-cells -- a common form of white blood cell normally involved in immune response -- into powerful immune-suppressive cells. Unlike their better-known cousins, T-cells, naturally-occurring immune-suppressing B-cells are almost unknown in nature and the notion of using them to control immunity is very new.

"GIFT15 can take your normal, run-of-the-mill B-cells and convert them -- in a Superman or Jekyll -Hyde sort of way -- into these super-powerful B-regulatory cells," Galipeau explained. "We can do that in a petri dish. We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect.

"And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away."

MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.

"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."

Too soon!

2009-08-04T20:35:00.000-07:00

Back too soon from the best getaway place out there!

The sunsets were especially amazing this weekend with the weather the way it is. I think I even got a bit of a tan! Lots of swimming in the ocean and interestingly enough, the hot weather didn't bother me at all. In fact, it would be hard to know I had MS this weekend. Oh, except for taking that little pill every morning and writing down the time in my journal :)

We were out on a boating trip and came across some crazy active seals frolicking about. They were slapping the water super hard! I'm wondering if we happened upon a mating dance in action. Hard to get a really good shot as we didn't want to get too close.

And Sadie... well, she did what she does best. Guard "her" beach.

Savary!

2009-07-31T15:02:00.000-07:00

Only 4 hours to go and I'll be here!

Way too hot!

2009-07-30T10:20:00.000-07:00

Hi everyone! Long time no posting... Tsk. Sorry about that! Living life a little bit too much I guess :) So, ummm, it's really hot here in Vancouver. Seriously hot. It went up to 35 degrees yesterday. Unbearable when you can't have AC! My condo complex doesn't allow for the unsightly look of AC units in the windows which really warrants running for council to change that considering we have this weather for another week.

A new thing happened yesterday. At noon, my body just quit. I could not stay awake or move really and just crashed out on the couch for about an hour. I felt better afterwards and thank god I wasen't working, but it was a bit unnerving. I haven't felt that before unless it was when mowing the lawn or exerting energy in some way. Weird stuff.

I have a few medical postings that I'll try to get to in the next week! Hope your all enjoying your summers.

Okay, I'll admit it.

2009-07-07T09:30:00.000-07:00

I joined the masses and am now on Twitter. My name there is of course RestPeriod. Come find me if you like! I'm mostly just randomly posting about the stuff in my life related to my MS. :) Hope to see you there!

Why repair of brain's wiring fails

2009-07-03T13:33:00.000-07:00

That darn Myelin... why can't it just repair it's self? Perhaps they've found out why!

"The investigation, conducted in mice and in human tissue, showed that repair of nerve fibers is hampered by biochemical signals that inhibit the development of cells known as oligodendrocytes, which function as repair workers in the brain.

Oligodendrocytes form a protective sheath, known as myelin, that insulates the fibrous cables, or axons, radiating from nerve cells. In multiple sclerosis, the immune system's T cells and B cells attack oligodendrocytes, ultimately damaging the myelin sheath to the point that the electrical signals transmitted by the axons beneath it are disrupted.

Remarkably, the brain generally is able to recruit fresh, immature oligodendrocytes to the myelin sheath to repair the damage, for a time. This explains why, in the most common form of the disease, known as relapsing remitting MS, the symptoms -- which range from tingling and numbness in the limbs to loss of vision and paralysis -- disappear or are greatly reduced, for some times months or years at a time.

Ultimately, however, the repair process falters and the disease progresses. In their study, the team set out to see if they could determine what was slowing down myelin repair. They lesioned a small region of white matter in healthy mice, then monitored the repair process, examining the tissue after five, 10, and 14 days.

To find out which genes were contributing to three key stages in the repair process – the recruitment of oligodendrocyte precursors to the site of injury, the maturation of those cells into functional oligodendrocytes, and the formation of a new myelin sheath -- they measured the activity of 1,040 genes. All of the genes they studied encode transcription factors, which regulate the activity of other genes. Their experiments showed that 50 transcription factors are working during key steps in myelin repair.

The team then honed in on a gene called Tcf4, because its expression was strong in damaged areas where repair attempts were under way.

Tcf4 is involved in a cascade of biochemical events known as the Wnt (pronounced "wint") pathway, whose importance has been well recognized in normal development of many tissues, including the brain. Until now, however, Wnt had not been linked to myelin production or repair.

"This is the first evidence implicating the Wnt pathway in multiple sclerosis," says lead author Stephen P.J. Fancy, PhD, a postdoctoral fellow in the Rowitch lab. "We consider this an exciting development in our efforts to understand why the repair process often fails in the disease."

Two Genes for MS!

2009-07-03T13:31:00.000-07:00

The research is working! Two genes were found to be linked to MS.

"The newly discovered gene locations in chromosomes 12 and 20, offer very promising targets which indicate susceptibility to MS," says Professor Kilpatrick.

"They also reveal a link between genetic susceptibility to MS and other autoimmune diseases including Type 1 diabetes, Rheumatoid Arthritis and Graves' Disease and the also the potential involvement of Vitamin D metabolism in the risk of developing these diseases."

"These results are like the key in the door – leading us to where to look for MS susceptibility," explains Professor Trevor Kilpatrick.

Team Mandatory Rest Period at the MS Walk 2009

2009-06-24T15:15:00.000-07:00

We raised 2588.00 this year!

The Best of Two Worlds Collide!

2009-06-11T11:22:00.000-07:00

Why haven't I seen this blog before now!? Knitting and MS fundraising in one place. Perfect!

Knitters Against MS! Team Claudia has raised just over 10,000 dollars for the National MS Society. Impressive.

Beach Time

2009-06-10T13:06:00.000-07:00

I seem to be at the beach a lot these days. The weather is just amazing here. Sadie likes it too:

So did Sydney (a friends dog) who I was trying to get some good photos of.

Sydney doesn't much care for going in the water, but she likes to look out at it:

Sadie also likes to sit and look pretty for the camera. Nevermind the food that was being offered behind the lens :)

Ocean Motion

2009-06-08T16:02:00.000-07:00

All my life I've known and felt ocean motion. You know.. when you spend a lot of time on a boat and then move to solid ground you still feel the ocean movement? So, It's been 24 hours since coming back to land and I still have ocean motion!! I kinda like it. Makes me feel like I'm still on vacation, however it's not so helpful when balance is a bit wonky! I wonder if it's accentuated with my MS? Thoughts?

Vitamin D - more news

2009-06-08T15:58:00.000-07:00

Man... I can't remember that fellows name in Alberta who stated all this many years ago... anyone have his website or know who I'm talking about? I love the idea of using Vitamin D as a treatment. I think part of me wants to believe that if I were to live biochemically as balanced as possible that my MS would somehow not survive such a pristine environment. Hmmm...

"According to research presented at the annual meeting of the American Academy of Neurology, high doses of the vitamin appear safe for patients with MS and may even lead to a reduction in disease relapses.

Dr. Jodie Burton, a neurologist at the University of Toronto, studied 25 people with relapsing-remitting multiple sclerosis, a form of the illness characterized by relapses during which new symptoms can appear or old ones resurface.

The patients were given an average of 14,000 international units (IU) of vitamin D3 a day for a year and then evaluated. Twenty-four other participants were allowed to take as much as 4,000 IU of vitamin D3 a day, though most averaged about 1,000 IU daily -- the amount recommended by many MS specialists.

Both groups also took 1,200 milligrams of calcium a day.

Burton's team found that only 14 per cent of those taking the high doses suffered relapses in their disease. In contrast, close to 40 per cent of the other MS patients relapsed. As well, those taking the high doses suffered 41 per cent fewer relapses than the year before the study began, compared with 17 per cent of those taking smaller doses.

Michel Cottier was one of the participants testing the safety of the high vitamin D dose. Before trying the treatment, Cottier would suffer an MS attack every nine months or so, in which he suddenly couldn't walk or move his arm.

"You have to stop working. You can't help your wife with the children anymore... simply, you can't use your body as you used to," he told CTV.

After the year on the high vitamin D dose, he hasn't relapsed in two and a half years, with no side effects, including no effect on calcium level abnormalities. Cottier is still taking about 6,000 IU of vitamin D a day, convinced it will ensure that his MS attacks won't return.

Dr. Paul O'Connor of MS Society of Canada said the results are positive, but they are still preliminary.

"I think the results showing that vitamin D reduces attacks... require confirmation in a properly designed study," he said.

"To me, it is extremely intriguing ... vitamin D is safe, it's cheap, and if we could show it helps patients with MS, it would be a huge step forward in making their lives easier."

The best results in the study were only observed in those who took the larger doses. People in the high-dose group were given escalating doses of the vitamin for six months, to a maximum of 40,000 IU daily. Doses were then gradually lowered over the next six months, averaging out to 14,000 IU daily for the year.

Burton advises MS patients to talk to their doctors before beginning vitamin D supplements, noting that too much of the vitamin can be harmful for people with certain medical conditions such as kidney disease.

O'Connor advises other MS patients not to take too much vitamin D, suggesting they not exceed 2,000 IU to 4,000 IU units a day until further research can prove that higher doses aren't dangerous.

Breastfeeding may lower risk of MS relapse

2009-06-08T15:49:00.000-07:00

I had always heard this to be true... but it looks like some more research has been done.

"The women were interviewed about their MS symptoms during each trimester of their pregnancies and then about their breastfeeding and menstruation history every few months in the 12 months after they gave birth.

The women with MS were more likely not to breastfeed and to begin supplemental formula feeding during their baby's first two months of life compared to the healthy women, the researchers found.

Of the 52 per cent of women with MS who did not breastfeed or who began regular supplemental feedings, 87 per cent had a relapse within a year of their babies' births. That compared to just 36 per cent of the women with MS who breastfed exclusively for at least two months.

The researchers note that the mothers who breastfed exclusively had significantly prolonged "lactational amenorrhea" (absence of a period), which seemed to be linked to a decreased risk of relapse in MS.

When the researchers asked the mothers with MS why some chose not to breastfeed exclusively, the women reported that their primary reason was so that they could begin taking their MS medications again. The medications, including interferon beta and natalizumab, work by modifying the immune system and are not recommended for use during pregnancy or breastfeeding.

The results of this study suggest that women with MS should be encouraged to breastfeed exclusively for at least the first two months instead of resuming medications, the authors conclude.

"Our findings call into question the benefit of foregoing breastfeeding to start MS therapies," they write, adding that larger studies are needed to confirm the findings.

The researchers say they aren't sure why breastfeeding might be beneficial to women with autoimmune diseases such as MS.

"Studies of immunity and breastfeeding, while plentiful, are predominantly focused on breast milk content and health benefits to the infant. Little is known about maternal immunity during breastfeeding."

Happy World MS Day!

2009-05-27T14:44:00.000-07:00

Thanks to all of you who sent me messages!

Today is World MS Day. Take a minute or two to watch the video set to U2's Beautiful Day, and take a second minute to learn about the disease if you can.

It's a good day when...

2009-05-18T13:03:00.000-07:00

I get to drive a 23 foot Boston Whaler!

May MS Awareness month

2009-05-14T09:41:00.001-07:00

The MS Society is posting a fact about MS every day this month. Here is todays:

Every day, three more people in Canada are diagnosed with MS.

And this is where the money goes!

2009-05-14T09:36:00.000-07:00

I always like to know where the money goes that I raise for the MS Society of Canada. And here it is! I couldn't be happier with what they're doing. Training the future as an investment for finding that cure warms my heart.

"Toronto, May 14/2009 - In a move intended to significantly accelerate the pace of MS research, the Multiple Sclerosis Society of Canada announced the establishment of five research and training centres involving over 100 established scientists and 250 trainees.

The entities, dubbed endMS Regional Research and Training Centres (RRTC), come less than one year after the MS Society launched a major fundraising initiative to alter the research landscape in Canada.

“The goal of these centres is to boost our capacity to conduct MS research through training of the next generation of MS researchers,” says Yves Savoie, president and chief executive officer of the MS Society of Canada.

The five centres are part of the endMS Research and Training Network, a collaboration of MS researchers and trainees across Canada. It is funded entirely by the MS Society of Canada and its goal is to accelerate the pace of discovery so that an end to MS is found as quickly as possible. The establishment of the five RRTCs serves as a key lynchpin in achieving this goal.

Each centre is comprised of multiple academic institutions and teaching hospitals within a geographic region: Western-Pacific, covering BC and Saskatchewan; Alberta; Manitoba-Ontario, excluding Ottawa; Quebec-Ottawa; and Atlantic, covering the four Atlantic provinces.

For the next three years, each centre will receive $100,000 per year to fund collaborative training and research activities.

With over 100 researchers and 250 trainees involved, the sheer number of individuals connected through one network is unprecedented in Canadian MS history. Fifty four institutions are represented, stretching from Newfoundland’s MS Clinic at Memorial University to the three campuses of the University of British Columbia.

“The five RRTCs cross an impressive latitude of institutions and clinics. Their establishment represents a new genesis of collaborative and highly focused activity designed to end multiple sclerosis,” says Savoie.

Researchers and trainees affiliated with each RRTC will collaborate through conferences, regional workshops, online tools and inter-lab exchanges through which trainees will leave their host institution for a set period of time to train at another within the Network.

“These centres will provide a structure that will allow us to identify new and established members of the research community with whom we can develop new approaches to solve complex problems,” says Dr. Jack Antel, scientific director of the endMS Research and Training Network and a neurologist at the Montreal Neurological Institute. “We hope to attract the best trainees with a strong educational environment and an impressive capacity to interact with peers and mentors from many disciplines.”

In September of 2008, the MS Society launched the endMS campaign with a goal of raising $60 million to fund research activities that will end multiple sclerosis. Over $32 million has been raised. Visit www.endMS.ca for more details or to donate to the effort.

Ouch

2009-05-12T14:07:00.000-07:00

So, maybe I spoke too soon about my latest attack being all gone. I'm very functional now. I can walk 5kms, I'm back hiking. See! I went to Buntzen Lake.

My legs aren't just giving out on me anymore. However... I hurt. A lot. All the time. Mostly on my right side. I went for a massage yesterday and I was brought to tears with a single light touch. That's something that just doesn't happen. Something is just not right inside me. It's kinda like muscles all around my core are all seized up and have no more elasticity on my right side only. So when my massage therapist would usually dig in and loosen me up, he could barely touch me without me flinching from the severe pain. it was a gruelling session and I feel better, but already today, I'm feeling the seizing up setting in again. Sigh... I was reading some MS blog today and saw Brain Cheese talking about MS pain. It's the first time I've really thought that maybe I'm feeling pain from my MS. And quite frankly, I'd like for it to go away now. Anyone else experience this?

Perfect place to be!

2009-05-09T18:26:00.000-07:00

Fast track approval for Fampridine

2009-05-07T10:31:00.000-07:00

They got it!

"Acorda is racing Biogen Idec Inc., Merck KGaA and Novartis AG to sell the first pill for multiple sclerosis, a disease now managed by injected medicines with $6 billion a year in worldwide sales. Acorda said the FDA will expedite its review of Fampridine as a “priority,” a process that typically takes six months, compared with 10 months for typical new drug applications.

“The priority review is a positive surprise,” said Phil Nadeau, an analyst with Cowen & Co. in New York, in a note to clients today.

Acorda received a “refuse to file” letter from the FDA on March 30. The agency sends such letters to companies whose new drug applications are incomplete, according to the FDA Web site."

Risk of Leukemia with Mitoxantrone Higher Than Thought

2009-05-05T12:33:00.000-07:00

Eeek. This is why clinical trials have to happen on all these drugs.

"The risk of developing leukemia as a side effect of a drug for multiple sclerosis (MS) is higher than previously reported, according to a study presented as part of the Late-breaking Science Program at the American Academy of Neurology's 61st Annual Meeting in Seattle, April 25 - May 2, 2009.

Mitoxantrone is an immunosuppressant drug approved by the FDA for treatment of several forms of advancing MS. It is one of only two drugs that has been shown to benefit people with secondary progressive MS who are having attacks. However, the drug can cause heart damage at high total doses. Due to this, the lifetime cumulative dose is equal to about eight to 12 doses over two to three years.

Previous studies have also shown that the people with MS treated with the drug have an increased risk of developing leukemia. Those studies showed that acute leukemia occurred in .07 percent to .25 percent of MS patients taking mitoxantrone. Today's retrospective study of 2,854 Italian people with MS receiving the drug found that leukemia occurred in .74 percent.

"This rate is significantly higher than what has been previously reported," said study author Vittorio Martinelli, MD, of University Vita-Salute in Milan, Italy. "The potential risk of leukemia should be carefully considered against the potential benefits of mitoxantrone treatment on every single patient."

The study participants all had at least one cycle of mitoxantrone treatment and were observed for at least one year. A total of 21 people developed leukemia, eight of whom died. The people who developed leukemia had more treatment cycles than those who did not develop leukemia -- 8.6 cycles versus 7.2 cycles. They also had a greater cumulative dose of mitoxantrone.

The leukemia occurred an average of three years after the first use of the drug and an average of 18 months after the end of treatment.

"It is vital that all MS patients treated with mitoxantrone undergo prolonged and careful hematological follow-up to check for acute leukemia," Martinelli said."

Update

2009-05-05T11:06:00.001-07:00

I don't think I posted anything about my latest attack and where I'm at with it. So... after being off work for 4 weeks in March I think I can say today that the attack is over. Phew! I don't believe I'm carrying any remnants with me. My legs work, no more giving out and I was able to do the 5kms walk at the MS walk! Fatigue stills seems to come and go as it usually does as does my numbness, but those are just status quo for me. So, let the hiking continue! The weather is certainly cooperating!

Stem-cell transplant 'reason for optimism': MS patient

2009-04-30T10:54:00.000-07:00

Go Dr. Freedman! Some of you may recall from my podcast days that Jennifer Molson was also on this clinical trial and was doing well. I wonder how she is now too. Read on my friends! Would you do this treatment?

Alex Normandin, 26, was diagnosed with multiple sclerosis nearly two years ago.

He had learned in medical school that MS is an unpredictable, often disabling illness of the central nervous system.

Symptoms vary but can include blurred vision, fatigue, problems with co-ordination, speech and muscles, loss of balance, and paralysis.

Normandin figured time was on his side because normally MS progresses very slowly, but he was devastated to find out he had an extremely aggressive form of MS, and he would likely be using a wheelchair within months.

Thankfully, he was fast-tracked for a cutting edge, experimental treatment: a bone marrow stem-cell transplant.

The procedure is not without risk — It is fatal in five per cent of cases because of the toxic chemotherapy drugs used to prepare a patient to receive a stem-cell transplant.

First, powerful chemotherapy drugs are used to erase patients' existing immune cells, leaving them temporarily open to infection.

Then, a stem-cell transplant "reboots" the body's ravaged immune system with a fresh one, minus the disease.

The experimental treatment trial had been run since 2000 by Ottawa bone marrow transplant expert Harold Atkins and MS neurologist Mark Freedman.

It isn't for everyone, Freedman noted, adding: "The alternative has to be so bad that death is on the table as an option."

Twenty four people took part in the trial. It was open only to those with rapidly progressing MS who failed to respond to routine therapy and who were also likely to become severely disabled.

Normandin became patient 19. His transplant took place in December 2008. It worked.

Not only does the disease appear to have stopped its progression, but Normandin says he feels his co-ordination and strength improving.

Normandin is buoyed by the treatment's eight-year track record — none of the 24 patients have suffered a relapse or a brain lesion.

Freedman stops short of calling it a cure, but this treatment seems to arrest the illness and allows some people to recover faculties they had lost.

"We're hopeful for Alex but it's too soon to say," Freedman said. The best improvements showed up 18 months after treatment and in patients with the least disabilities, he said.

In people with significant disabilities, "there's . . . no way of reversing it," Freedman said.

Freedman's team is now looking at why some patients get better and others don't.

One theory is that the stem cells are doing more than "rebooting" the immune system, he said. Perhaps the cells are migrating to the brain or to damaged sites and directing the repairs, he said.

The trial procedure costs would be about $50,000 to $60,000 per patient.

It isn't available because it has yet to be approved. But the treatment would pay for itself within three years because the usual MS patient uses about $20,000 worth of drugs annually, Freedman noted.

About 1,000 new cases of MS are diagnosed in Canada each year. Some 55,000 to 75,000 Canadians have MS.

"Just one more reason for optimism, especially for the (thousands) of MS patients in Canada," Normandin said."

Plasma Exchange Helps if no other MS drug does

2009-04-30T10:52:00.000-07:00

You don't see that very often... a 25 year old study. Good stuff.

""There is no other treatment that brings about such a reversal in multiple sclerosis," says Bhupendra Khatri, M.D., the study's principal investigator and director of Aurora's Regional Multiple Sclerosis Center. "This treatment can turn lives around."

Over 25 years, Dr. Khatri and his team followed 271 patients with chronic and progressive multiple sclerosis. These patients had not responded to drug therapy and were experiencing an increasing decline in their motor and verbal abilities. Patients received weekly plasma exchange treatments for 10 weeks, with the pace of plasma exchange therapy slowing over time or as their condition improved.

Out of 271 patients, 217 or 80 percent, saw a long-term improvement in their disability.

Unlike conventional multiple sclerosis treatments, such as chemotherapy drugs, which can have serious side effects such as heart damage or leukemia, the plasma exchange therapy was found to be safe, with no serious side effects.

The study, "Sustained Long-Term Improvement in Disability with Plasma Exchange in Patients with Worsening Multiple Sclerosis: Results of a 25-Year Study," was presented April 29 at the American Academy of Neurology annual meeting in Seattle.

Dr. Khatri explained that patients with chronic, progressive multiple sclerosis may see their condition stabilize with conventional therapies, but they generally do not see any improvement in their condition. This is what makes the plasma exchange therapy all the more remarkable, according to Dr. Khatri. Not only did the majority of patients with worsening symptoms respond to plasma exchange, over time many patients found their weak limbs became stronger, their steps steadier and their speech clearer. Some grew strong enough that they could return to work.

Plasma exchange is a process where the patient's blood is run through a centrifuge, which separates out the plasma. The plasma is replaced with a synthetic fluid, and the blood is returned to the patient. Plasma exchange is thought to work because it filters out the agents that attack the nervous system. Once the bloodstream is cleared, the body has the opportunity to repair itself.

Glutamate identified as predictor of disease progression

2009-04-30T10:49:00.000-07:00

Whoa. This seems like great news for future treatment options! Find out how much Glutamate you are making and stop it so progression can slow. I heart research.

"Glutamate, a neurotransmitter, in normal levels performs fundamental processes like memory and sensory perception. In excess, it triggers a cascade of negative reactions in the brain leading to many of the complications associated with neurologic diseases such as MS, Parkinson's disease, stroke, ALS (amyotrophic lateral sclerosis or Lou Gehrig's disease) and Alzheimer's disease by destroying nerve cells and causing seizures, injury after stroke, and the perception of pain, among other problems.

Already a target for therapeutic drug development, the identification of the glutamate pathway for MS suggests a new way for clinicians to monitor treatment of these drugs.

"This is the first time that we have had the ability to measure glutamate toxicity in the brain in real time, which gives us a marker for monitoring disease progression as well as our treatment of the disease," said Daniel Pelletier, MD, study author, associate professor of neurology and a member of the Multiple Sclerosis Research Group at the University of California, San Francisco.

"For instance, we already have anti-glutamate drugs, so now we can assess, with imaging, the impact of the therapy and the progression of the disease," he said.

Elevated levels of glutamate in the brain are understood clinically as a cause of cell injury and death. Injury to neuro-axons, which are the long fibers that extend from the cell body of a neuron cell toward other nerve cells, is partly responsible for disability progression in MS. In a previous study using proton MR spectroscopic imaging, the research team reported that MS brains have significant elevation of glutamate concentrations. For this study, researchers looked for levels of glutamate and levels of NAA (n-acteylaspartate), a marker of axonal integrity in mature brains, to see if a relationship existed.

The team scanned 265 MS patients annually and followed them for an average of 1.8 years. Accounting for disease duration and age of onset, researchers found that significant annual loss of NAA, which is a measure of neurodegeneration, was associated with concentration of glutamate. This finding indicated that the higher the level of glutamate, the greater the expected neuro-axonal loss over time.

According to the authors, the study is the largest clinical analysis to date of metabolism byproducts in the brain, and the results strongly support the link between the excess of glutamate and decline of neuro-axonal integrity in MS.

The finding, Pelletier says, goes beyond MS. "Now that we have those markers, we can quantify levels of glutamate for other neurologic diseases, which could be another way to track disease progression and therapeutic intervention."

70% of Multiple Sclerosis Patients Are Relapse-Free After 3 Years on Fingolimod

2009-04-28T15:58:00.001-07:00

Holy! How did I miss this one! Great news for the little that I take every morning! I wonder if this gets Novartis closer to getting FDA approval.

"Seventy percent of multiple sclerosis patients taking the experimental drug FTY720 -- fingolimod -- were relapse free after three years of daily treatment.

The finding comes from an extended phase II clinical trial in which all patients receive the immunity-suppressing drug. Researchers Giancarlo Comi, MD, of San Raffaele Hospital in Milan, Italy, reported the findings at this week's meeting of the American Academy of Neurology in Chicago.

"The first-line treatments for MS ... reduce the relapse rate by only about 30%, so this is a significant development for people with MS," Comi says in a news release.

All current MS drugs must be administered by injection or infusion -- a huge disadvantage for patients, says neurologist Orly Avitzur, MD, medical advisor for Consumer Reports. Avitzur was not involved in the fingolimod study.

"This drug is completely different from any other on the market for MS," Avitzur tells WebMD. "It is the first oral MS drug to get this far, and if it is successful in large-scale clinical trials, it will make a huge difference in quality of life for MS patients."

In the phase II study, 173 patients with the relapsing form of MS (a type of MS that repeatedly relapses and has periods of recovery in between) received fingolimod for three years. More than 67% of the patients were free of relapses after three years, with an annual relapse rate of 0.2%, says Shreeram Aradhye, MD, vice president and senior global medical program director for Novartis, the company developing fingolimod.

"When you look at all the biologic treatments [medications that target the immune system to reduce the frequency and severity of attacks and reduce lesions within the brain] for MS, this 0.2% annualized relapse rate seems to be a new benchmark," Aradhye tells WebMD. "This was complemented by the encouraging observation that 89% of patients at year three have no evidence of inflammation in MRI brain scans [a sign of MS progression]."

Another way to your money reach the MS Society!

2009-04-23T09:02:00.000-07:00

MS Awareness Month Founders Day Campaign
Drop by your local Mr. Lube location on Saturday, May 9th, 2009 for an oil change and as part of their MS Awareness Month Founders Day Campaign, Mr. Lube will donate $5 to the MS Society of Canada.

Thanks you Mr. Lube. That's nice of you.

Provincial Election 2009: Build Support for Action on MS

2009-04-22T15:37:00.000-07:00

If you live in BC and want to get involved with getting MS in the candidates ears while they continue on their election campaigns, you have got to see what the MS Society of Canada has just done. I love it. It's easy, quick and gets the message across.

The form at this link will create a form letter and send directly to your ridings candidates. It's straight forward and to the point. In fact, I'm now hoping to run into a candidate so i can talk to them about the key points we all need resolved!

Here's the form:

http://e-activist.com/ea-campaign/clientcampaign.do?a.client.id=41&ea.campaign.id=3008

And then tell a bunch more folks to do it too! Let's make our voices heard!

4 Days left!

2009-04-22T13:43:00.000-07:00

Well, my last ditch efforts are out there in raising as much money possible for the MS Walk on Sunday! For those that need a great fund raising idea; I think I made the most money by selling Jumbo Mr. Freeze's! For those in the US... a friend tells me they are like an Otter Pop. With the weather changing and the sunshine coming out, it made for a great afternoon sugar-rush treat here at work. I bought a big box of them at Costco and then sold them for $2.00 each with all proceeds going the MS Society. Yesterday I tried to sell the rest for $1.00 each under a 50% off sale :)

So, if anyone else can donate to my walk, please visit me HERE!

Happy Birthday to me!

2009-04-16T14:44:00.000-07:00

33 today! Not sure how that happened! 33? Jeesh :)

Less than 10 days!

2009-04-15T13:42:00.000-07:00

The MS Walk is right around the corner! If you can donate any amount, I would appreciate that greatly!

Click here to donate!

I'm doing a Jumbo Mr. Freezee sale today at work to try to drum up a few more pennies. It's a tough year for donations to continue help funding research.

Less Cancer?

2009-04-09T13:26:00.000-07:00

So, there is a pay off for having MS!? Woot! Lower cancer rates for us! Yay! One less thing to deal with ;)

"After an average follow-up of 35 years, the researchers found that multiple sclerosis patients had a lower overall cancer risk (hazard ratio 0.91), although the risk was higher for cancers such as brain tumors (hazard ratio, 1.44), urinary organ cancers (HR, 1.27) and cancers of the small intestine (HR, 1.63). Cancer risk was even lower in patients diagnosed at an earlier age and in women. Overall cancer risk was similar in parents of multiple sclerosis patients and parents of patients without the disease, the report indicates.

"The reduction in cancer risk in patients with multiple sclerosis may result from behavioral change, treatment, or we speculate that some immunologic characteristics of multiple sclerosis disease activity improve antitumor surveillance," Bahmanyar and colleagues conclude. "The lack of association among parents indicates that a simple inherited characteristic is unlikely to explain the reduced cancer risk among patients with multiple sclerosis."

Tsk, tsk, tsk

2009-04-09T13:19:00.000-07:00

A slap on the wrist for drug companies came out from the FDA. No more misleading internet ads without risks being included! You know, it's not like you can just get these drugs over the counter. You have to discuss these options with a qualified doctor too. Do your homework peoples! Don't believe the internets! :)

"For the first time, the Food and Drug Administration on Friday warned 14 of the world's leading pharmaceutical companies about misleading Internet ads that appear when people do online queries for their medical products through search engines such as Google.

The FDA said the ads are misleading because they omit risk information associated with the products.

Companies that received the letters include Biogen Idec Inc. (BIIB), Sanofi- Aventis (SNY), Johnson & Johnson (JNJ) and GlaxoSmithKline (GSK).

Biogen received a warning letter for its multiple-sclerosis drug Tysabri. The ads say "A Multiple Sclerosis Treatment That's Different from the Others" or " Satisfied with your MS Medication or Looking for Something Different?" but don't include any risk information.

"Their casual approach to Tysabri treatment is extraordinary in light of the potentially lethal risks of the drug and the stringent controls over its distribution," the FDA said in its letter to Biogen on March 26. The letter was posted on the agency's Web site Friday.

Biogen's ad includes a link to the Web site for the drug, which does contain the relevant risk information. The FDA said the link "does not mitigate the misleading omission of risk information from these promotional materials."

Unfortunate

2009-04-09T13:16:00.001-07:00

Sad to see this one... JK Rowling has a lot of money to offer. It's too bad she's leaving the MS community behind now.

"There is a new report tonight stating J.K. Rowling has resigned her role as Patron of MS Society Scotland, an organization she has long supported. The Press Association is reporting tonight that JKR is stepping aside from her involvement in the charity due to internal conflicts, and has this quote from the Harry Potter author:

"I have now reluctantly decided that I cannot, in good conscience, continue to be the public face of a charity that is changing beyond recognition from the one with which I have been so proud to be associated."

Back at work!

2009-04-09T09:16:00.000-07:00

I went back to work this week after being off for 4 weeks. Feels good to be back in society that's for sure.

If nothing else, this attack let me knit more for my nephew :)

A hat for these continuing cold days:

And a little jacket!

It's a little big on him but thats good because the chunky monkey is growing like a weed!

I had good company too while hanging around waiting for my muscles to stop seizing:

My legs don't feel like they are what they used to be "yet". I hope this isn't the new me at least. I still feel a bit stompy when I walk and I'm all over the place with my balance. Time... I'm hating time when the weather is changing and I want to be out on a hike!!

Worlds collide

2009-04-04T16:16:00.000-07:00

I love it. This blog was named after my favourite show The Amazing Race. They have to take a "Mandatory Rest Period" during the race after every pit stop. I had to take a "Mandatory Rest Period" after my double vision kicked in for 5 months. And now look!

The host of the show is a bike rider and he's being sponsored by the US MS society for a ride he's doing! Go Phil!!!

"But Keoghan isn't undertaking the road trip strictly for fitness. His adventure, sponsored by the health-store chain GNC, will take him to GNC outlets, to casting calls for The Amazing Race, to signings of his book No Opportunity Wasted, and to promotions of his favorite portable food NOW One Square Meals. The journey will also help him raise money and awareness for Bike MS.

The National Multiple Sclerosis Society "is sponsoring nine of the major rides I am doing," he says. "I have been involved with the MS chapter here in California, and I have participated in their rides over the last four years."

Keoghan hopes he is not alone on the road. He is encouraging fans and well-wishers to check out his Twitter updates – or, better yet, turn out in person to see him, or even sign up to ride with him."

Sativex results for MS spasticity

2009-03-31T12:50:00.000-07:00

The controversal liquid cannibinoid drug Bayer created is coming out with some good results. Perhaps this will help them get this drug more widely available to those that could benefit from it:

"According to GW Pharmaceuticals, the prospectively defined primary efficacy endpoint of the study - the difference between the mean change in spasticity severity of Sativex vs Placebo in Phase B - was highly statistically significantly in favour of Sativex (p=0.0002). The numeric difference between the two groups as measured on a numeric rating scale was 0.84 units from a baseline of 3.89, greater than that achieved in previous studies.

The difference between Sativex and placebo was also significant for a number of secondary endpoints. Approximately 74% of Sativex patients achieved an improvement of greater than 30% in their spasticity score over the entire study versus 51% on placebo (p=0.0003), the company said. "

MS Walk time

2009-03-24T15:15:00.000-07:00

It's that time of year again! I'm hoping to raise $5000.00 for the MS Society of Canada to help contribute to further research for my disease. Here is the link to my fund raising page:

https://msofs.mssociety.ca/2009WALK/Sponsor.aspx?&PID=1086771&L=2

You can donate on the site by clicking the red "pledge me" button in the top right hand corner. Any amount would be gladly accepted! I'll hopefully be doing the 5kms walk on April 26th this year. If anyone wants to join my team please let me know!

Thanks!
Kim Holland

For Second Life fans

2009-03-24T14:28:00.000-07:00

I was forwarded these two youtube videos on what is being done in Second Life for folks with MS. Good stuffs guys and thanks for forwarding Justine.

Part One:

http://www.youtube.com/watch?v=BRVJiLXqXHU

Part Two:

http://www.youtube.com/watch?v=Lz-5Qq_yM04&feature=channel_page

Inevitable

2009-03-24T14:21:00.000-07:00

Well, well, well... It finally happened! I'm having an attack. Darn! I almost made it two years since being on Fingolimod! So, a few weeks back my legs just didn't feel right. And not in that numb way I usually get. After a week, I couldn't rely on my legs holding me up. They would give out and my muscles were so tight it was painful with all movement. Of course the fatigue kicked in quite nicely so all around not so easy to deal with as my last attack of crazy numbness everywhere. So, I was taken off work to help me rest and heal. I was offered a round of the good ole' steriods, but I declined. Once I stopped working and and started sleeping I could see that I'm on the upswing. I'm back at work next week which will be a bit strange. I forgot how weird it is to just be here in my place out of society. Loads of time to knit at least ;) Speaking of knitting... have you all seen this? It makes me smile every time I see it.

2009-03-17T11:24:00.000-07:00

A little late in posting this, but Oprah has Montel Williams on today talking about MS.

Cuter

2009-02-25T10:19:00.000-08:00

The nephew continues to get cuter :)

I just signed up today for the MS walk as team captain for Team Mandatory Rest Period! Anyone here in the lower mainland want to join my team? I'll be walking the Tri-cities walk on April 26th.

Less Claustrophic MRI Machines on the Way?

2009-02-19T09:18:00.000-08:00

YES PLEASE!!! :)

"Currently, for the MRI to work, radio frequency coils which deliver the magnetic waves must be nearly flush against a patient's skin hence the confining scanner tubes.

But David Brunner, a physicist at the University of Zurich, and colleagues have seen early success in replacing the coils with an antenna up to 9.8 feet (3 meters) away from a patient.

The antenna transmits and receives the radio frequency waves, which are focused by a special conductive lining inside the MRI scanning tube.

"Very Promising"

The extra room "will usually be on the order of 15-20 centimeters [6-8 inches] in diameter, which really is a lot in terms of patient comfort," said study co-author Klaas Pruessmann, also of the University of Zurich.

What's more, the "traveling waves" transmitted by the antenna offer more uniform coverage of large body parts and greater detail, said study co-author Klaas Pruessmann, also of the University of Zurich.

The technology "is currently being explored in centers around the world, including many in the U.S., and early pre-clinical applications look very promising," Pruessmann said.

Peter Bornert, principal scientist at Philips Research Europe in Hamburg, Germany, called the new technique "very promising from a scientific point of view" pointed out that several previous successful attempts to improve MRI in the lab have not yet made it to market.

A good strong...

2009-02-17T13:45:00.001-08:00

HUG!!!

Echo and Flick, brother and sister.

Laquinimod, was granted "fast track" designation by the FDA

2009-02-17T10:14:00.000-08:00

An oral med is moving forward with getting reviewed by the FDA a little bit faster than usual. Yay! Okay, I say yay for Liquinimod but really I would have liked to see my oral drug (Fingolimod) in this press release instead ;)

"Teva's oral treatment for multiple sclerosis, Laquinimod, was granted "fast track" designation by the US Food and Drug Administration (FDA). Fast Track designation can potentially facilitate development and expedite the review process. According to Teva, this may allow the drug to enter the market as soon as late 2011."

2009-02-15T14:00:00.000-08:00

Don't mind me, folks - just fixing Kim's RSS feed. The link (which will be updated) is http://www.lectio.ca/kim/blog/rss.xml.

Nothing to see here. Move along. Enjoy the rest of your weekend.

Electrical shocks while driving

2009-02-12T10:01:00.000-08:00

This is a new one for me. I was driving home from work yesterday and my left foot starting jumping. It felt like someone plugged in my big toe to an electrical socket and kept jolting me unexpectedly. Thank god I don't drive a standard! It was unnerving and continued for about a half hour. Not constant but here and there for maybe 2 seconds each time. Can you say annoying??!!

Vitamin D Deficiency May Increase MS Risk

2009-02-10T15:38:00.001-08:00

Well, well, well... finally! A link to MS with the infamous Vitamin D we've all been hearing about for many years. And I find it quite cool to also see an environmental trigger identified to tell me why I have MS! Go research go!

"The findings could explain why MS, an autoimmune condition in which the body mistakenly attacks brain tissue and nerves, is relatively rare in countries near the sunny equator. MS is much more common in the darker and gloomier northern latitudes (and far southern latitudes).

Other studies have suggested that people with MS were more likely to have been born in the spring (with the bulk of pregnancy during the dark winter months) than in the fall. Sunlight is the main source of vitamin D, although it’s also found in salmon, mackerel, tuna fish, and as an additive to milk and other products.

“It’s a phenomena found over and over again, says Moses Rodriguez, MD, a professor of neurology at the Mayo Clinic in Minnesota, who was not involved in the new research. “This study provides some link that vitamin D may be one of the environmental factors that predisposes people to MS.

No one really knows the exact cause of MS, but researchers suspect it’s a combination of genes and environmental factors. About 2.5 million people worldwide have MS.

In the study, researchers from the University of Oxford and the University of British Columbia looked at a gene variant known as DRB1*1501, which is associated with MS. About 1 in 100 people who inherit two copies of the gene (one from each parent) develop MS, compared to 1 in 300 who have only one copy and 1 in 1,000 of those in the general population.

The researchers found that proteins activated by vitamin D bind to a DNA sequence next to the DRB1*1501 variant, which switches the gene on. If too little vitamin D is present, the gene may not function properly, which may cause a susceptibility to MS.

"We were surprised to find the [vitamin] D connection," says study coauthor George Ebers, action research professor of clinical neurology at the University of Oxford. “We suspect women who are planning to have children may benefit from taking D in regions where they are likely to be deficient.

There is no proof that vitamin D will prevent, treat, or cure the disease. However, the researchers suspect that a lack of vitamin D during early life may prevent the thymus, an immune system gland that sits on the top of the heart, from deleting harmful white blood cells.

These cells, known as T cells, may go on to attack the central nervous system and damage myelin, the insulation that protects nerves. In MS, this abnormal immune response affects nerve impulses to and from the brain. Symptoms of MS include numbness in the limbs, pain, coordination problems, vertigo, and vision impairment, depending on the nerves that are affected.

Sleep clinic appointment update

2009-02-10T13:54:00.000-08:00

Well, I finally had my sleep clinic appointment. What a great experience. Without medications, I am going to be trying to modify a few things that make a whole lot of sense to help me get a better sleep. The big one that never occurred to me is to regulate my "waking up" time. So over the next couple of weeks, I need to pick what time I will wake up at 7 days a week. Naturally, it seems that my body does always wake up at 6:30ish, so that may be what I try. Bye, bye sleep in mornings. This should be an interesting change. I guess your body works better when it knows when it always has to wake up. We'll see!

Reset button called Stem Cell Transplant

2009-02-10T13:50:00.001-08:00

A small trial is showing some good results on what stem cells can do in MS.

"Stem cell transplantation seems to stop and, in some cases, undo neurological damage in people with multiple sclerosis, a small study shows.

The trial involved just 21 patients, but a larger, randomized trial is under way in the United States, Canada and Brazil.

"This is the first trial for any phase of MS, whether early or later, of any therapy anywhere that has shown reversal of neurological disability," said study author Dr. Richard K. Burt, chief of the division of immunotherapy at the Northwestern University Feinberg School of Medicine in Chicago.

The technique used in this study, autologous non-myeloablative hemopoietic stem cell transplantation, "resets" the immune system and is already used for secondary-progressive MS.

"This has primarily been used over the last 10 to 15 years in progressive MS patients, people who are doing terribly, and we have nothing to offer them," O'Looney explained. "There have been some fatalities associated with this aggressive protocol."

And success was limited.

But, for the new study, researchers tweaked the technique and moved it to relapse-remitting patients who were younger than in previous studies.

"This is a safer approach, and we do it earlier in the disease because people have less disability so it's safer again," Burt said.

Seriously Starbucks?

2009-01-27T16:01:00.000-08:00

Okay, so this has nothing to do with MS, but I'm a bit stunned that this happened at a Starbucks not far from me! Nuts were in a product that didn't list nuts in the ingredients. So a nut allergy person ate it. And suffered huge!

"The Canadian Food Inspection Agency is investigating Starbucks' labelling practices, after a young woman ate a parfait from a Coquitlam, B.C., outlet and almost died.

"I was shaking. My eyes were rolling into the back of my head. I wasn't breathing," said Kristin Gardiner. "The ambulance attendant later told me they couldn't get me to breathe."

Gardiner is allergic to nuts. On May 19, 2008, Gardiner said she ate a Starbucks Peach Yogurt Parfait — after finding no mention of nuts in the listed ingredients and being assured by a Starbucks employee that it was nut-free.

"I am very careful with what I eat and what I consume, and I always read things," said Gardiner.

The product included a granola topping, but the label listed the granola ingredients as "rolled oats, brown sugar…." Gardiner said the parfait was the first thing she ate that day.

Almost immediately after eating the dessert, Gardiner said she started feeling itchy. Within minutes, she couldn't breathe. She went into anaphylactic shock as the ambulance arrived.

"I was dying. There was no oxygen going to my brain," she said.

Cladribine

2009-01-27T15:58:00.000-08:00

Another oral med option for MS that is looking at some good results from a 2 year study. Who will make to FDA approval first!? :)

"The trial, called CLARITY, was a two year study involving 1,326 people with relapsing/remitting MS receiving one of two doses of cladribine or an inactive placebo.

During the study, people receiving the lower dose of cladribine experienced a 58% reduction in relapse rates compared to the placebo group (an average of 0.14 relapses compared to 0.33). Side effects included lymphopenia, a reduction in white blood cells, headaches and nasopharyngitis (a cold)."

7 hours to go!

2009-01-21T13:33:00.000-08:00

I'll admit it. I'm doing an hourly countdown until the new season of Lost starts :) Who's joining me in this addiction?

You know you have MS when...

2009-01-14T10:20:00.001-08:00

Okay, I know I'm not the only one here. My feet get seriously cold sometimes. And stay cold for as long as they want. I can wear warm cushy socks and do everything possible to warm up but they decide when and how. My legs don't even have to be actively tingly or numb for this to happen. It's just me.

Last night I thought I would have a nice soak in a bath and that would regulate my body temperature nicely. I checked the temperature with my hands and arm before putting a frozen foot in and it seemed a nice temperature. I put my foot in and I got this massive shock feeling over and over and I had to get out! It was like I was plugged into an electrical socket and I couldn't stop the sensation from carrying on. I got out of the tub, but that didn't help. Weird messages I guess travelling to my feet cause that. Too many speed bumps on my nerve path? Who knows. What I do know is normal people don't get that reaction!

So, I ran cold water for a long time and made the bath luke warm and got back in. Not so nice and relaxing as I would have liked, but the more luke warm water seemed to do the trick for my feet. For the moment. I got out of the tub and went to bed but then promptly overheated. I removed all my blankets and spent another hour and a half cooling down. I fell asleep and at 3am I woke up cold. I yanked back my covers to warm up again but couldn't get back to sleep or regulate my body temperature for another 3 hours. Then my alarm went off. 5 hours of sleep. Sigh... this is going to be a long day.

Longer acting Avonex trials

2009-01-13T15:27:00.000-08:00

Neat. New doses for a longer acting Avonex are being trialed so you would only have to inject once every 2 weeks or once a month. Nice.

"Biogen Idec Inc (BIIB.O) has moved a long-acting version of its multiple sclerosis drug, Avonex, into trials designed to meet requirements for regulatory approval, the company's chief executive said on Wednesday.

CEO Jim Mullen said during an investor conference being held in New York that the company is studying dosing the drug once every two weeks as well as once monthly.

"I think we've got a good chance of similar efficacy as interferons," he said.

Patients in the trials will be treated for one year and full results will likely be available in two years, Mullen added."

If a neurologist had MS, what would he do?

2009-01-13T15:24:00.000-08:00

Pretty cool little must watch video with Dr. Jock Murray of Dalhousie University. He talks about MS and then is asked what he would choose for treatment if he had MS and how he would manage the disease.

Click here to watch.

Fingolimod is better than Avonex!

2009-01-13T15:21:00.001-08:00

And not just because it's a once a day pill! Less relapses too! Yay! I was particularly happy to see that Novartis will be seeking FDA approval at the end of this year!

"Fingolimod, an oral drug under development for treating multiple sclerosis, was shown to be more effective than current treatments in a recent trial.

The trial consisted of over 1,200 individuals receiving either fingolimod or Avonex. On average, the people receiving Avonex had 0.33 relapses per year while the people on fingolimod had between 0.16 and 0.20 relapses (depending on dosage tested).

The full results have not been released yet, but the company that owns the drug, Novartis, will submit for FDA approval by the end of 2009. That means there could be an effective oral MS treatment available in 2010. This is great news to all of us who deal with side effects and injection site reactions on a daily/weekly/monthly basis."

2009-01-12T16:18:00.000-08:00

The snow is almost all gone and the rain has kicked in full force :) Ahhhh the familiar scenery is back!

2009-01-12T16:10:00.000-08:00

Wow Ikea. I really like your furniture. I also don't mind putting it together most of the time. But this one!? This Pax wardrobe was CRAZY. 20% off right now or not! After all said and done, the roll out drawers can't roll out with the sliding glass door. Sigh... well, they can if I wedge the door as far over as possible and then let the drawer keep the slider open. Sigh....

So, now that the building project is done, I'll be able to catch up on all those google alerts of whats happening in the world of MS!

Where did it go?

2009-01-08T10:18:00.000-08:00

Ahem... ya, so I clearly know nothing about managing a blog ;) But Heather does and she graciously helped me out! Great big thank you for getting me back online! I'll be catching up soon!

For now, here is what my commute to work looked like with all the snow that continued to fall over the holidays!

More snow coming!

2008-12-23T10:34:00.001-08:00

Holy smokes! I could have a white christmas! That never happens! 20 to 30cms is coming tonight and tomorrow!

MS drug Tysabri may promote brain infection-study

2008-12-23T10:28:00.000-08:00

Eek. This is not something I wanted to see. Taking drug holidays is something new to my thinking but my doctor mentioned it the other day when I was at the clinic. Interesting. What a balance that would entail.

"The popular multiple sclerosis drug Tysabri appears to promote a rare brain infection by suppressing immune system cells in the brain, researchers said on Tuesday.

The researchers, who conducted an autopsy on an MS patient who died while taking the drug, said it may be possible to make the drug safer by giving patients treatment "holidays" from time to time to allow the brain's immune protection to recover.

Tysabri, known generically as natalizumab and made by Biogen Idec Inc (BIIB.O) and Elan Corp (ELN.I)(ELN.N) of Ireland, can cause a serious brain infection called progressive multifocal leukoencephalopathy or PML.

It was pulled off the market soon after being introduced in 2004, but sold again beginning in 2006 because there were few good options for patients with MS.

On Monday Biogen reported the fourth case of PML this year -- in a European patient who had been taking Tysabri exclusively for 26 months.

"Whether or not treatments other than prolonged, uninterrupted dosing may benefit patients with MS should be tested in controlled clinical trials," Dr. Olaf Stuve, a neurologist at the University of Texas Southwestern Medical School in Dallas, said in a statement.

Tysabri's package insert label cautions that patients taking the drug have a 1-in-1,000 risk of developing PML.

Writing in the Archives of Neurology, Stuve and colleagues said they found significantly fewer immune cells called CD4 T cells in and around the patient's blood vessels in the brain.

"Natalizumab is very effective in keeping pro-inflammatory cells out of the brain to reduce damage from MS," Stuve said in a statement. But by doing so it may promote infection in some people.

Stuve said doctors should look for biomarkers -- easily tested indicators -- in people who may be developing the syndrome so they may be taken off the drug.

"It's a very effective drug, and it's clear that the vast majority of patients are greatly benefiting from its use," Stuve said. He said about 43,000 people had taken natalizumab since 2006."

It's snowing!

2008-12-17T10:31:00.000-08:00

My favourite thing! When it snows here, we all don't know how to deal with it. Lots of folks work from home etc. but I drove in to work and love looking out my window to see it falling! I want to go skiing! Hey, with how well my health has been lately, I'm going to go skiing this year! It's been almost 10 years since I went skiing! I'll let you know how that goes :) And now, a little nice warm sunset from Kona while the snow coniues to fall!

Fingolimod (FTY720) news!

2008-12-17T10:23:00.000-08:00

Well, here's the latest results from the Transforms clinical trial I started on and finished 6 months ago! Great news and it looks like all is moving forward with going to regulatory approvals. I'm still on the drug and still no relapses a year and half later! I went for my latest check in yesterday and all is the same. I did get to see my white blood cell count which was finally unblinded to me now that I'm on the extention phase of the trial. I'm certainly lower than normal people so perhaps thats why I still haven't kicked this darn cold!

"Initial results from the one-year Phase III TRANSFORMS study show the investigational oral compound FTY720 (fingolimod) has superior efficacy to a current standard of care for patients with relapsing-remitting multiple sclerosis (MS). Patients on oral FTY720 experienced significantly fewer relapses than those treated with the injectable medicine interferon beta-1a (Avonex®*)[1]. The study, the first one-year head-to-head Phase III trial against a standard of care in MS, met its primary endpoint for both doses of FTY720.

The annualized relapse rate at one year for patients given FTY720 0.5 mg was 0.16, representing a 52% reduction compared to a relapse rate of 0.33 for interferon beta-1a (p<0.001). The FTY720 1.25 mg dose also showed a significant reduction in relapses with a rate of 0.20 representing a 38% reduction against interferon beta-1a (p<0.001). No statistically significant difference was seen between the two FTY720 doses[1].

Comprehensive analyses of the TRANSFORMS study data are ongoing, and detailed results are planned to be presented at a leading scientific congress in 2009. Regulatory submissions remain on track to be completed in the US and EU at the end of 2009."

Home Sweet Home

2008-12-12T12:51:00.000-08:00

First a couple pictures :) Here's my new BFF.

And the amazing ocean!

Great view from the suite.

Sadly I caught a wicked cold on the plane ride down and am still trying to kick it before Christmas is here. I'm pretty stunned at getting a cold like this one. I never have a cold for this long! What the heck is my immune system up to!?