Thursday, August 07, 2008

About Multiple Sclerosis: What is Going to Happen to Me?
Multiple Sclerosis

In the Spotlight | More Topics |

from Julie Stachowiak, Ph.D.
I sometimes wish I had a crystal ball that would tell me what would happen to me years (or months) down the road. One question that always used to be at the top of my "need to know" list is: Will my RRMS become secondary-progressive MS? In the past, I thought about this quite a bit. Then I decided not to think about it quite so much. I mean, after all, what could I do about it that I am not already doing?

That is a wise and brave attitude that is easy to maintain - as long as I don't have any new symptoms or really bad days, that is. Those can send me back into behaviors of looking endlessly at published MS statistics and articles, and potential signs of progression in myself.

I wrote the first article here when I was in a calm and fairly stable mood, hoping to answer some questions for those of you who journey with me on this path of questioning. I threw in the next two to remind us that this probably is not the most productive use of time. Take care of yourselves, my friends.

In the Spotlight

Some Signs That RRMS May Become SPMS
Secondary-progressive multiple sclerosis (SPMS) is a type of MS which develops in people with relapsing-remitting MS (RRMS). It is characterized by a more steady progression of symptoms and disability and fewer or no relapses.

Before disease-modifying treatments became widely available, 80 to 90% of people with RRMS would eventually develop SPMS within 25 years (50% within 10 years). It is now unclear what effect these medications will have on MS progression, but it is assumed (and hoped) that this proportion will be much lower and slower to develop.

For those of us who are living with RRMS, however, the questions are always with us: Will I develop SPMS? Is this new symptom a sign that my MS is becoming progressive? What is my prognosis?

In an attempt to get my own head around the situation, now and in the future, I have put together the following article: Who Develops Secondary-Progressive Multiple Sclerosis?: Some Signs That Relapsing-Remitting MS May Become Secondary-Progressive MS. I hope it can answer some of your questions, as well.
Iyengar Yoga Course for People with Multiple Sclerosis

As a person with multiple sclerosis (MS), I am fascinated with Iyengar Yoga. It is a form of Hatha Yoga that focuses on structure, healing and destressing. Iyengar yoga typically employs props, like blocks and straps, to help people hold their poses with the best possible form. I have tried it a couple of times and find it much more therapeutic than jumping right into some of the other forms of yoga that really relies on flexibility and strength to get benefits. Frankly, I think I also like the fact that I feel slightly less humiliated and more competent when I am able to use a block to make up for the fact that I cannot gracefully bend myself all the way to the floor for some of the poses.

If this sounds good to you, I have good news for you. Yogaworks in Santa Monica is holding a series of Iyengar yoga classes specifically designed for people with MS.

Yogaworks is offering a free introductory class on Saturday, August 9th from 2:00-4:00 pm for people who want to learn more.

The full series of 8 classes will run on Mondays from September 8th to October 27th for 6:00-8:00 pm. The fee for the series is $250. The classes will be taught at the YogaWorks Institute, located at 1430 Olympic Boulevard, Santa Monica, CA, 90404. To register, contact Nikki Sotto Affleck at 949.631.7408. For more information about Iyengar Therapeutics, please visit:

For those of you who might not live in California, try this article for inspiration to find a yoga class in your area: Yoga and MS.
Using Visualization

I originally wrote this article to teach people how to use visualization to help them get through difficult injections. However, I have started using this technique to get through many difficult situations, including just getting to the end of another hot summer day without losing hope. Give it a try: Picture yourself being calm, feeling good and not being bothered by the heat, as you know that cooler months are on the way.

Okay, I know it might sound corny. Some of you might even be angry that I would suggest such a silly thing. I can only tell you that (after throwing my Provigil across the room in tears), this was my last resort and it helped me. Sometimes and somewhat, but still...

Read the full article: Using Visualization To Reduce Stress

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    Dr. Smyth

    Neurologist, MS Specialist
    View BIO


  • I have been recently diagnosed with MS and have been given a 5 day course of steroids. I have experienced many side effects including increased appetite, skin problems etc. My hair started falling out especially around the temple and nape area to the point where there are bald patches. I don't know why this is happening, if it's permanent, or if it can be reversed. Is it the steroids, MS or just the stress of it all that is causing me to have this problem?

    A :

  • When people are having a relapse of their MS that is affecting their ability to carry out their daily activities, often neurologists will give really high dose steroids by mouth or by IV. We give a really high dose for a short course (3 to 5 days) in order to suppress the inflammation, shorten the relapse duration and to minimize long-term side effects.

    Because the dose of steroids is so high, people can experience many side effects while taking them. The most common side effect is psychiatric – with either increased energy, irritability, difficulty sleeping or increased depression. Rarely, people can have hallucinations. Appetite does increase during that time because of the steroids, and your skin can break out. There is also a very rare chance of a hip problem.
    However, because the course is so short (days), these symptoms do not usually persist for longer than a week after the steroids. These are reversible.
    The hair falling out would not be due to the steroids or to the MS. I think that may be due to stress, that can also be reversible. But I would suggest that you discuss this with your family doctor.
    8/7/2008 7:31:55 AM
    More answers from Dr. Penelope Smyth
    More answers in the category: Treatment

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  • Newsletter
    August 2008

    Personal Stories

    Connect with others whose lives are affected by MS, like writer/director John Sinner.

    read his story
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    MS Fact

    Rehabilitation can be valuable throughout the course of MS.

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    In the News

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    Miles Walked

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    Research News

    Research Photo

    Robotics and Mobility
    Could robotics play a role in restoring mobility in people living with MS? A highly regarded researcher aims to find out. It's just one of hundreds of studies being funded by the National MS Society.

    Getting Results


    For Christine it was ADA vs WC
    The Americans with Disabilities Act is great, but compliance can be spotty. As an MS activist in New Jersey discovered, honest businesses want to comply but sometimes they need us to show them the way forward.

    Moving Forward

    Moving Forward

    Real Talk
    John-Marc Parsons once was so ashamed of his MS, he moved from New York to Georgia in part so nobody would see the effects. But after participating in a live Web cast called Real Talk. Real Answers: Living with MS in Your 20s and 30s, John-Marc now considers himself an activist. Learn more >>

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    The image “” cannot be displayed, because it contains errors.

    Researchers able to direct stem cells to create certain progeny | - Canada - wire - Features

  • August 6, 2008 - 18:12

    Sheryl Ubelacker, THE CANADIAN PRESS

    TORONTO - Canadian researchers have found a way to control embryonic stem cells so they give rise to only one category of cell, a first step in medicine's quest to generate specific tissues to repair or replace parts of the body that are diseased, damaged or just plain worn out.

    Embryonic stem cells are programmed to spawn all the different cells of the body, from those that make up the brain or heart to those that comprise the liver or skin. Scientists worldwide have been trying to figure out the mechanisms that decide which cell becomes what.

    In Wednesday's issue of the journal Stem Cell, scientists at Toronto's Hospital for Sick Children describe how they prodded stem cells to generate a single category of cell. Called early-stage endoderm cells, they give rise to only certain tissues in the body.

    "By adding a gene, we've essentially been able to take embryonic stem cells, which make everything, and push them a little bit down one particular pathway, the endoderm pathway," senior author Janet Rossant, chief of research at Sick Kids Hospital, said in an interview Wednesday.

    "And that's the pathway of the cells that give rise to all the tissues of the gut, to the lungs, to the liver, to the pancreas, to very important cells that one day could be used for regenerative medicine."

    "These cells themselves would not be used for transplantation, but they're a tool to help us understand that process."

    Lead author Cheryle Sequin, a post-doctoral fellow in Rossant's lab, said the researchers took existing embryonic stem cell lines and manipulated their internal control mechanism by zeroing in on a particular gene.

    "So we created a new kind of stem cell, limited to making only one cell type," she said.

    Having accomplished this first step, the next research endeavours will involve determining what other steps are needed to coax the stem cells into begetting specific offspring, as it were, from lung cells to repair the damage of cystic fibrosis to pancreatic cells that could be transplanted into diabetics to provide insulin.

    "It's just really about controlling stem cells, is really what it comes down to," Seguin said. "We're one step closer to being able to use these cells if we're one step closer to being able to control what they can become."

    Mick Bhatia, scientific director of the Stem Cell and Cancer Research Institute at McMaster University, called the work an important advance because it demonstrates that stem cell differentiation can be controlled or directed, a prerequisite for their use in regenerative medicine.

    While embryonic stem cells' ability to produce any cell in the body is what gives them so much promise, the challenge for scientists is how to make them become what is needed for specific patients, Bhatia said from Hamilton.

    "How do you get a cell that can become over 200 different things to become one thing and not the other 199?" he said, noting that many scientists have argued that such control is not possible, that other mechanisms govern the decision to become one cell type versus others.

    Bhatia likened embryonic stem cells to students about to enter high school, who have the option of taking courses to prepare for a career in business, engineering or science, for instance. If they choose engineering, they then have to decide what kind of engineering - civil, industrial or electrical.

    Continuing the analogy, he said the Sick Kids researchers have directed the stem cells to take the endoderm (engineering) pathway; the next step will be determining how to make them become lung cells (civil engineering) or liver cells (electrical engineering).

    "I think what they've done is establish a proof of principle that stem cells can be directed in a very refined way," said Bhatia, who was not involved in the research.

    "And that's important to what they've shown here, but it's more important to the broader issue of people asking: 'Can stem cells be controlled?' And I think this is showing yes, here's an example where they can be controlled."

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