Risk Factors for MS

March 31, 2010 at 8:15 pm · Filed under Risk Factors, Statistics

Here are some interesting stats from the article Multiple Sclerosis: Hope Through Research about what can increase a person’s risk of getting MS:

Gender:

Women are 2 to 3 times more likely than men to become diagnosed with MS. Researchers believe that the hormonal differences in men and women account for higher risk in women. Hormones have a clear interaction with MS and are known to be protective during pregnancy. This relationship is just beginning to be explored.

Family:

If no immediate members of your family have MS, then your chances of having MS are 1 in 750. If you have a parent or sibling with MS, your risk increases to 1 in 100. If you have an identical twin with MS, your risk is 1 in 4. It is interesting that identical twins do not always both have MS, even though they share 100% of genetic information. This fact is why researchers have concluded that MS is not simply a genetic disease.

Ethnicity and Geography:

MS occurs more often in people of northern European descent, but other ethnicities may also have MS. This could be explained by the fact that MS occurs more frequently in regions that are farther from the equator (above 40 degrees latitude). Rates of MS in these northern regions can be as much as 5 times higher. If a person migrates from a high-risk region to a low risk region before the age of 15, they take on the lower risk. Researchers think that puberty (hormones) and geography may somehow interact to increase MS risk.

Age:

Most MS is diagnosed between the ages of 20 and 50, thought both childhood and late onset MS are possible. This is usually the age at which the first symptoms appear and a person begins the process of getting diagnosed with MS.

You can learn more about risk factors of MS at the National Institute of Neurological Disorders and Stroke.

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Dealing with MS in Important Relationships

March 31, 2010 at 4:58 am · Filed under Tips

Important relationships take effort and energy — even without the added challenges of MS. While MS does pose some additional challenges, it can also enrich relationships and bring people closer together. Click on the headings of each topic for more in depth tips and information.

Deciding to Disclose… Or Not

Telling others about your MS may be the first thing you want to do — or the last. No two people feel exactly the same about disclosing their MS to others. Keeping in mind that once the information is out there, you can’t take it back, the key is figuring out when disclosure is in your best interest and when it is not. Read more about disclosing to family, friends, employers and colleagues, and someone you are dating.

Keeping Balance in One-on-One Relationships

When one person in a couple is affected by MS, the other person lives with it as well. To keep your relationship healthy and balanced, it’s important to make sure that both of you stay on the giving and recieving end of the relationship, in spite of whatever changes MS may bring. Learn how to manage MS as team and enhance your communication and intimacy.

Parenting When You Have MS

Family planning decisions – the good news is that women and men with MS can be successful parents of happy, healthy children. Learn the up-to-date findings about the impact of MS on conception, pregnancy, delivery, and breastfeeding, and the impact of childbearing on MS.

Talking with children about MS – kids tend to worry when they know something’s up, even if Mom or Dad has no visible symptoms. Get some hints about how and when to begin talking about MS with your children and check out the special resources for young children and teens.

Taking Care of Yourself While Taking Care of Someone Else

Caring for someone with a chronic illness like MS can be deeply satisfying. Spouses and partners, family, and friends can be drawn more closely together by their shared concerns and collaborative efforts. But caregiving can also be physically and emotionally exhausting, particularly for the primary caregiver. While this is most often a partner or spouse, the primary caregiver may also be an adult child, parent, or friend. Whoever you are, remember that paying attention to your own health and well-being is essential to being able to care for someone else.

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MS and CCSVI?

March 31, 2010 at 4:16 am · Filed under News, Research

In the past, much about MS has been unknown. There is no cure and even the treatments are problematic. But within the last couple of years many new theories have been formed and many research breakthroughs have been discovered.

One of these new theories started by Dr. Paolo Zamboni is that MS is related to chronic cerebrospinal venous insufficiency. CCSVI is a chronic problem where blood from the brain and spine has trouble getting back to the heart. It is caused by a narrowing in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”…a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain.

Dr. Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain – and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.

In an initial study, Dr. Paolo Zamboni took 65 patients with relapsing-remitting MS, performed a simple operation to unblock restricted bloodflow out of the brain – and two years after the surgery, 73% of the patients had no symptoms. Dr. Zamboni’s thinking could turn the current understanding of MS on its head, and offer many sufferers a complete cure.

“Dr. Zamboni’s lucky find is yet to be accepted by the medical community, which is traditionally slow to accept revolutionary ideas. Still, most agree that while further study needs to be undertaken before this is looked upon as a cure for MS, the results thus far have been very positive.” You can read more about Dr. Zamboni’s research efforts here.

Also, here is a video that illustrates vain blocks in CCSVI associated with multiple sclerosis, and relates diagnosis and treatment.

You can also learn more and stay updated by checking out the CCSVI in Multiple Sclerosis group on facebook, or by visiting the Buffalo Neuroimaging Analysis Center to learn more about the clinical trials going on now.

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Real People with MS: Their Stories

March 31, 2010 at 3:43 am · Filed under Stories

Here are a few inspiring stories from people who have been diagnosed with MS and have chosen to live their lives to the best of the ability and offer their support and resources to others:

Montel William’s Story

When the neurologist said those words -”You Have MS” it hit me like a brick. I thought the diagnosis was a death sentence. I learned that I had been having MS episodes off and on for more than 20 years, but like so many, I was in denial about my illness.

I’d heard of multiple sclerosis, but I didn’t really know what it was. I knew it meant excruciating pain and that eventually I could lose control of my body. I also knew there was no cure. That was enough to plunge me into the depths of despair.

During the next two months, I experienced the lowest moments of my life. I couldn’t believe this was happening to me. I became so despondent that I considered ending it all. But I knew my children and my family loved me and depended on me, and I couldn’t let them down.

It became clear that I had a choice to make. I could spend the rest of my life feeling sorry for myself as the victim of a tragic fate. Or I could view my illness as a call to action — an opportunity to make a difference in the lives of millions who suffer from MS and their loved ones.

As the host of my own nationally syndicated television talk show, I realized I had unique resources at my disposal to meet the MS challenge head on. I had both the means and the method to get the most up-to-date information available on MS from the planet’s foremost authorities and spread the word.

I sought out the experts at Harvard Medical School. I traveled to Sweden for evaluation and treatment at the renowned Karolinska Institute. I read every book and article I could get my hands on, and I talked to countless people like myself who live every day with MS. I learned that I had been having MS episodes off and on for more than 20 years, but like so many, I was in denial about my illness.

Then in 1999, I went public with my battle against MS. Although I was warned that this disclosure could harm my career, I couldn’t remain silent. I have one of the biggest mouths on this planet, and I decided to keep using it until everyone everywhere knows about MS, what can be done to fight it, and a cure is found.

I started The Montel Williams MS Foundation. Every dollar raised goes to research dedicated toward a cure for MS.  The world needs to mobilize against MS and knock it out for good. I believe to the depth of my soul that all of these goals can be achieved. It will take courage and commitment, but these are qualities we can help each other find in ourselves. I know we can build a future of hope and health, and together we’re going to win.

To read more about Montel’s story  and what he is doing to help find the cure for MS you can visit The Montel Williams MS Foundation.

Ann Romney’s story

“I woke up one day in a foreign body. Nothing was working. I felt a profound weakness and terrible fatigue”.

It was in 1998 when Ann Romney first realized something was wrong. Soon she had a name for what it was: Multiple Sclerosis.

“I was relieved for the diagnosis, and then realized, this is serious,” Romney said. Describing it as a frightening time in her life, she made a decision — to seek out that which brought her joy. For her, that was getting back on a horse. “I didn’t ride when I was raising the children, and when I got the diagnosis and said, ‘I better go back and get on before I am unable to,’ and strange things started happening. I started getting stronger,” Romney said. With her horse, Baron, she has found a unique relationship. He has been gentle when she was weak, and strengthened as she did, bringing her unbridled joy — a therapy she recommends for all. “It doesn’t have to be horseback riding. It can be kayaking, mountain climbing, art — find your passion and what brings you joy,” she said.

There are a number of drug therapies to treat MS. Ann Romney has instead chosen a combination of riding, acupuncture and reflexology — what she describes as a mix of eastern and western approaches. “Everyone has to find their own way. For some, the drugs are miraculous. I wish we had a cure,” Romney said. Right now, Ann Romney says, life has dealt her a difficult hand, but she’s not about to give up. “I wasn’t going to fold. And everyone deals with it differently. And some are dealt a much tougher hand,” she said. It is her goal now to help those people, and everyone with MS.

Clay Walker’s Story

Clay Walker was the high school football star in Beaumont, Texas. Clay’s diagnosis with relapsing-remitting multiple sclerosis (RRMS) came at a pivotal time in his life. In 1996, at the age of 26, he recently had finished his fourth album, his career in country music was exploding, and his oldest daughter had just been born. The last thing he expected was the tingling, numbness on his right side, and facial spasms that hit while he was on tour. After a battery of tests, he was diagnosed with RRMS. He worried how it would affect his career. In characteristic fashion, Clay prayed about it and then set his mind to doing everything he could to overcome the obstacles MS set before him. Clay has kept touring and recording steadily since he was diagnosed. He is well known for his high-energy concerts and performance style. Knowing that others with MS have not been so lucky led him to the decision to form the Band Against MS Foundation, a not-for-profit organization dedicated to making information about living with MS available and providing funding for research. Being diagnosed with MS hasn’t been easy,” said Clay. “I choose to view it as a ‘bump in the road’ rather than a detour, because I have been blessed to still be able to do the things I love.” You can visit Clay Walker’s Band Against MS for more information.

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MS Stats in the US

March 30, 2010 at 4:31 am · Filed under Statistics

With all of this talk about MS, it’s important to know the scope of the problem. Here are a few statistics, courtesy of eMedTV:

MS Statistic on Actual Numbers

No one knows exactly how many people have MS. It is believed that there are currently about 250,000 to 350,000 people in the United States who have been diagnosed with multiple sclerosis. This estimate suggests that approximately 200 new cases are diagnosed each week.

MS Statistics on Location

MS is five times more prevalent in temperate climates — such as those found in the northern United States, Canada, and Europe — than in tropical regions.
Furthermore, the age of 15 seems to be significant in terms of risk for developing the disease. Some studies indicate that a person moving from a high-risk (temperate) to a low-risk (tropical) area before the age of 15 tends to adopt the risk (in this case, low) of the new area and vice versa. Other studies suggest that people moving after age 15 maintain the risk of the area where they grew up.
MS Statistics on Environmental Impact

The findings of the previously mentioned studies indicate a strong role for an environmental factor in the cause of MS. It is possible that, at the time of or immediately following puberty, patients acquire an infection with a long latency period (the period of time in which the infection is present in the person without producing any noticeable symptoms). Other studies suggest that people of certain races and ethnicities may be more susceptible to the unknown geographic or climatic element.
Periodically, scientists receive reports of MS “clusters.” The most famous of these MS “epidemics” took place in the Faeroe Islands north of Scotland in the years following the arrival of British troops during World War II. Despite intense study of this and other clusters, no direct environmental factor has been identified. Likewise, no definitive evidence has been found to link daily stress to MS attacks, although there is evidence that the risk of MS symptoms worsening is greater after acute viral illnesses.
MS Statistics on Economic Costs

MS is a lifelong chronic disease diagnosed primarily in young adults who have a virtually normal life expectancy. Consequently, the economic, social, and medical costs associated with the disease are significant. Estimates place the annual cost of MS in the United States in the billions of dollars.

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The Wheelchair Kamikaze

March 29, 2010 at 6:35 pm · Filed under News

This was a interesting find. Every year there are awards for best weblogs (best medical weblog, best literary weblog, best medical technologies/informatics weblog, etc) sponsored by Epocrates, which is a company who develops mobile and web-based solutions that assist physicians and other healthcare professionals in answering questions during patient consultations, and voted on by visitors to the websites.

The winner of the 2009 best patient blog award went to a man named Marc, or as most people know him, the Wheelchair Kamikaze.

Marc is a 46 year old man living in New York who was diagnosed with Progressive Primary MS in 2003 and is now living in a wheelchair. His website is described on the Epocrates website as:

“the blog of a fearless Manhattanite with Multiple Sclerosis. Marc, the author, covers MS news and what life is like to live with the debilitating disease. However, this blog certainly isn’t all about his affliction. In a lot of ways, it’s more about what is peripheral and outside of MS, simply from his point of view.”

His site has fabulous photos and videos of the world shot from the perspective of Marc’s wheelchair, as well as updates and information about everything MS. This is a great source, not only because of the information, but because Marc is quite passionate about this topic, and he really pours himself into his articles and pictures.

Check the site out yourself – The Wheelchair Kamikaze: The Rants, Ruminations, and Reflections of a Mad MS Patient

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Lab Discovery May Lead to Better MS Treatments

March 29, 2010 at 5:35 pm · Filed under News, Research

There may be two categories of multiple sclerosis (aside from the 4 types) and each may respond differently to treatment with the first-line drug commonly prescribed for the condition, new research suggests.

Among multiple sclerosis (MS) patients who take the popular drug, known as interferon beta, overall effectiveness is only fair, with about half of all patients experiencing an average one-third reduction in recurrences, according to researchers at Stanford University.

In this study, which was performed in mice and human blood samples, investigators focused on two cytokines called gamma interferon and IL-17. Cytokines are chemicals used by immune cells to communicate.

The researchers found that treatment interferon beta benefited mice with MS induced by gamma-interferon-secreting T cells but worsened symptoms in mice with MS induced by IL-17-secreting T cells.

In the next phase of the study, the researchers found that human blood samples with low levels of a variety of IL-17, called IL-17F, responded well to interferon beta treatment while those with very high IL-17F levels (about one-third of patients) responded poorly to the drug.

If the findings are confirmed in large human studies and by other laboratories, it could mean that MS patients might someday be able to have a blood test to determine whether they’re likely to respond to treatment with interferon beta.

Read the article in the Wall Street Journal

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Multiple Sclerosis and Stem Cell Research

March 29, 2010 at 4:54 pm · Filed under News, Research

Recently, patients being treated for multiple sclerosis with their own bone marrow stem cells have shown great promise in some clinical trials where acute new cell damage has not yet occurred.

Here is an awesome story from the Multiple Sclerosis Resource Centre of a man in Australia being treated now:

A Canberra man diagnosed with multiple sclerosis (MS) just over 12 months ago appears to be on the road to recovery after being treated with stem cells.

Ben Leahy was in a wheelchair earlier this year and had suffered partial vision loss in one eye, but has since recovered to the point where he is walking.

The 20-year-old’s remarkable recovery came after he underwent a procedure in which stem cells were harvested from his bone marrow, before chemicals were used to destroy all his existing immune cells.

Mr. Leahy’s stem cells were then re-injected.

ACT neurologist Dr Colin Andrews said the treatment appeared to have reversed the effects of MS, which Mr. Leahy was diagnosed with in August 2008.

Dr Andrews said Mr. Leahy still had mild weakness in his right leg and some visual loss in one eye, but appeared to be recovering well.

“At the moment, there’s a good chance we may have arrested the disease,” he told ABC News.

The treatment, which carried a risk of death of eight per cent several years ago, was performed in Sydney after Dr Andrews was unable to get the green light from peers in Canberra.

It has also given hope to other sufferers of the disease.

Dr Andrews said the treatment offered between a 60 per cent and 80 per cent chance of halting the disease in some patients and a good chance of reversing it in others.

Use of stem cell technologies to treat multiple sclerosis is designed to literally “reset” immune system function and is focusing on reversing or slowing early diagnosis of multiple sclerosis.  Recently, an international symposium (Stem Cell Transplantation in Multiple Sclerosis: Sharing The Experience) was conducted in Moscow, Russia to discuss perspectives in new methods of treating multiple sclerosis through autologous hematopoietic (bone marrow stem cells that may ‘morph’ or develop into a variety of stem cell types) stem cell transplantation combined with high dose immunosuppressive therapies.

What an exciting new development! This research has been going on for quite a while now, and hopefully with more clinical trials will be able to keep presenting positive results to come up with a better treatment!

You can read more about this here.

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The Four Types of MS

March 24, 2010 at 4:07 am · Filed under Symptoms

I think it is important for people to know that MS affects each individual differently. Courtesy of the All About Multiple Sclerosis website, here are the four types of MS described in detail:

1. Relapsing/Remitting (RRMS):

This is characterised by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Around twice as many women as men present with this variety.

2. Secondary Progressive (SPMS):

After a number of years many people who have had relapsing/remitting MS will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery. After 10 years, 50% of people with relapsing/remitting MS will have developed secondary progressive. By 25 to 30 years, that figure will have risen to 90%.

3. Progressive Relapsing Multiple Sclerosis (PRMS):

This form of MS follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.

4. Primary Progressive (PPMS):

This type of MS is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPMS differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive MS often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive – for example, people with Primary Progressive are less likely to develop cognitive problems.

You can learn about different subgroups of each of these types here.

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Could Teeth Brushing Impact MS?

March 24, 2010 at 3:53 am · Filed under News

It is known that having “bad” bacteria in your body can cause the immune system to act up and (potentially) worsen autoimmune diseases. In multiple sclerosis, this could theoretically mean an increase in the severity of MS symptoms.

To test this theory, researchers conducted an experiment with a common bacteria, Porphyromas gingivalis (the cause of gingivitis). It is known that these bacteria produce a lipid that can cause the immune system to act up. The researchers injected the lipid into mice that had a “mouse version” of MS. The MS-like symptoms in the mice worsened after the lipid was injected.

Bottom line: While no “real life” conclusions can be drawn from this experiment, this may give us one more reason (among many) to maintain good oral hygiene.

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