caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Thursday, April 30, 2009
Stem-cell transplant 'reason for optimism': MS patient
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

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

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."

Tuesday, April 28, 2009
70% of Multiple Sclerosis Patients Are Relapse-Free After 3 Years on Fingolimod
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]."

Thursday, April 23, 2009
Another way to your money reach the MS Society!
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.

Wednesday, April 22, 2009
Provincial Election 2009: Build Support for Action on MS
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:

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

4 Days left!

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!

Thursday, April 16, 2009
Happy Birthday to me!
33 today! Not sure how that happened! 33? Jeesh :)

Wednesday, April 15, 2009
Less than 10 days!
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.

Thursday, April 9, 2009
Less Cancer?
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

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."


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!

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!
5 months old!

I had good company too while hanging around waiting for my muscles to stop seizing:
Echo, sun and grass
Nice pose

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!!

Saturday, April 4, 2009
Worlds collide
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."