Author Archives: Jen

Types of Multiple Sclerosis

Posted on by 2 comments

MS is very unpredictable and it often defies its own classifications. Many patients note that although they have relapsing/remitting MS, they seem to have lingering symptoms after definite attacks. The same holds true for those who were diagnosed with primary progressive multiple sclerosis and who find themselves experiencing “attacks” as well as steady disease progression. In years past, there were four recognized disease courses, but as of late, neurologists and MS scientists are acknowledging several other multiple sclerosis disease patterns.

Silent MS

Not much is known about this type of multiple sclerosis. Apparently, a small amount of people live their lives with no physical symptoms of multiple sclerosis, and it is only upon death (during autopsies) that doctors learn about this group of patients through their discovered brain and spinal cord lesions.

Benign MS

This form of multiple sclerosis accounts for about 10-20% of the MS population. It is marked by few attacks with long periods of remission, with little accumulated disability. Often doctors use this term for patients who have suffered isolated, single attacks, but the true form of this course can only be judged after years of the disease with few serious attacks. Sometimes this is also referred to as “mild” MS.

Relapsing-Remitting MS

RRMS is the most common form of multiple sclerosis, both at disease onset (85% of all cases) and as a part of the overall, collective types of MS (up to 45% of all patients.) Onset is generally sudden, with an actual attack marking the beginning of the disease, followed by a period of remission with full or partial recovery from the attack. RRMS varies greatly among patients. Some experience small, non-debilitating attacks that last for a week or so, while others have full-blown attacks that can perpetuate for a month or more. Whatever the magnitude of the attacks, it has been observed that they usually become harder to rebound from as time goes on, and about 50% of RRMS patients enter a secondary progressive phase after about 10 years of the disease, while as many as 80% or more of RRMS patients enter it after 20 years of the disease. Statistics for patients who take disease-modifying drugs are not yet conclusive, since these medications have only been around since the early 1990’s.

Secondary-Progressive MS

This form of multiple sclerosis is exactly what its name implies: the second phase in a course of MS. RRMS patients have a 50% chance of developing this variety of MS after 10 years if they are not treated with disease-modifying medication. At the 20 year mark, as many as 80% or more of RRMS patients will enter this phase if not treated with medication. At this time, specific data is not available for the percentage of patients who enter this phase who do take disease-modifying meds. SPMS is defined as the stage where patients stop having clear attacks and clear remissions and begin to have gradual, steady decline and mounting disability. Approximately 40% of the MS population lives with this type of disease.

Primary-Progressive MS

This form of MS is usually more aggressive from the onset. It tends to occur more in men and those who are 40 years or older at the time of disease onset. There are no clear attacks and remissions, and decline and disability are gradual but continuous. This accounts for about 5-10% of the entire MS population.

Progressive-Relapsing MS

This is a little-acknowledged disease course because it overlaps with RRMS and PPMS. What is known is that there is a clear progression of disability from the beginning of disease onset, but there may be overlaps of attacks (relapses) and remissions that may or may not display full recovery. There is no clear percentage of patients who live with this form of the disease.

Marburg’s Disease or Malignant MS

This is a very rare form of MS that has a severely progressive course and can be fatal within several months to several years. It generally strikes at a very young age (under 20 years) and most doctors see very few cases of this during the courses of their medical careers.

References:

  • Barnes, David. Multiple Sclerosis Questions and Answers. Merit Publishing International: Coral Springs, Florida, 2000.
  • Kalb, Rosalind C., PhD. Multiple Sclerosis: The Questions You Have, The Answers You Need, 4th Ed. Demos Medical Publishing, LLC: New York, NY, 2008.
  • Rosner, Louis J., MD, and Shelley Ross. Multiple Sclerosis: New Hope and Practical Advice for People with MS and Their Families. Simon & Schuster: New York, NY, 2008.
Posted in Basic Info

Help! I’m Addicted to Facebook

Posted on by 5 comments

Note to readers: I joined Facebook today at the urging of a friend because we’re having our 20 year reunion pretty soon. Well, the entire world is on it! Most of my entire HS class and other people I haven’t thought about in years. So much for curbing my computer addiction. I spent a good portion of the afternoon reminiscing and writing on people’s “walls” and leaving messages.

HELP ME WITH THE INSANITY (and get me to a yoga class which I can’t seem to accomplish.)

Posted in Blog

Multiple Sclerosis and Meditation

Posted on by 2 comments

The Buddha, StockXchng.com

Having a stressful disease like multiple sclerosis can cause racing thoughts, anxiety, and loss of inner focus. I often find myself worrying too much about the future, which is not yet carved in stone. And I also find myself not enjoying the present moment, which can bring serenity and an awareness of beauty and the preciousness of life. The following meditation techniques are short and simple, and they can restore needed peace of mind and focus on the present moment.

Mindfulness Meditation

A form of meditation that brings the participant into the present, calming moment is mindfulness meditation. Participants can access this present-mind status by concentrating on their current breathing.

The process of mindfulness meditation is simple. As a person becomes mindful of his or her surroundings (sights, sounds, smells), he or she settles into a comfortable spot and becomes aware of the breathing process. The mind relaxes and focuses on this breathing as the outside world disappears. Slower, relaxed breathing is helpful for heart rate, digestion, blood pressure, and anxiety. Distracting thoughts are squelched with the promise of addressing them later.

This practice and all of the other meditation practices can range from 5-15 minutes, and are most helpful if done two times a day.

Journey Meditation

This form of meditation involves visualization. The participant imagines a peaceful, relaxing scene in his or her mind, including sounds and smells. Relaxation sets in as the meditator concentrates on this peaceful image, such as a beach, a forest, a farm, and so on.

Practicing journey meditation involves sitting in a comfortable spot and resting hands on the knees or thighs. Several slow breaths clear the mind as the meditator imagines a serene image. The focus on this scene banishes worries as relaxation and tranquility set in.

Movement Meditation

This form of meditation, which involves movement, can include yoga and tai chi stances. It helps to draw in good energy and cast out bad, stale energy.

To practice movement meditation, cleanse the body with a few initial deep breaths. Then take a comfortable stance or sitting position and concentrate on flowing, fluid movements of your choice, such as opening the arms or stretching out the legs. This meditation focuses on the movements that the body makes, and it is great for stiff, painful joints or sore muscles.

Vibrational or Sounding Meditation

This type of meditation has been seen in movies and on television. It employs the use of a repetitive sound or word; essentially it is a form of chanting. The word “vibrational” comes from the movements or vibrations of the vocal cords.

To practice vibrational/sounding meditation, pick a comfy spot and sit or stand. Cleanse the mind with several deep breaths. Then select a word that appeals to you. A good choice would be one that is multi-syllabled and calming, such as “peacefulness.” Short sounds like “ah” or “ohm” also work. Chant the word and focus on it, letting the outside world fade into the distance.

Posted in Exercise/Meditation Info

What Causes Multiple Sclerosis Depression?

Posted on by 2 comments

Google ImagesLike any chronic illness, multiple sclerosis can cause depression. People who never thought they could be down in the dumps find themselves helpless against the despair that illness can bring. Chronic neurological illnesses, including MS, can have frightening symptoms, such as seizures, loss of motor functionings, fluctuating mental capacities, or odd sensory perceptions.

At the same time, studies have shown that depression can come from the disease itself. And what about interferon medications? Do they bring about the blues? With so many factors contributing to depression, it’s a big question whether MS depression specifically comes from the disease itself (organic), from the stress of being chronically ill, or even from one of the disease-modifying medications (situational.) And can the depression stem from a combination of these things?

Organic Depression

Doctors believe that multiple sclerosis depression can be caused by the illness itself. Apparently, inflammation and myelin scarring can form in areas of the brain that control emotions. Just like other symptoms that come and go at whim, depression can strike for no reason— a person may not be experiencing any other symptoms, an acute attack, or traumatic stress in his or her life. Many people with multiple sclerosis experience depression at some point during the disease. Lots of these people battle chronic depression. Chronic depression with MS can be the result of attacks that have caused inflammation and nerve damage, and this depression becomes a chronic symptom, much like tingling or numbness.

Situational Depression

On the other hand, MS depression can be caused by external circumstances that induce it. A primary depression trigger is dealing with the stress and uncertainty of chronic illness. People with multiple sclerosis must handle recurring symptoms such as fatigue, weakness, and/or pain. This interferes with jobs (for those who can work outside the home) and personal lives. Those unable to work outside the home deal with isolation. Then there’s the uncertainty of the future. Will there be more attacks? Will they be more severe? When will they strike? For all of these reasons, multiple sclerosis depression can set in and take hold.

Another situational depression factor is the use of some of the disease-modifying drugs. These include Avonex, Betaseron, and Rebif. All of these drugs are called interferons, and all have the capability of causing depression. The drugs can reduce seretonin levels in the brain, causing the blues. Not everyone experiences this side-effect, so it would be hard to say if a user’s depression definitely came from one of these drugs.

Conclusion

With several factors possibly contributing to depression, the source(s) cannot be 100% determined. Whatever the reason for multiple sclerosis depression, it is real and it can be treated. Whether organic or situational or a combination of the two, it can be helped in order to better cope with chronic illness. Taking the bull by the horns allows for a more fulfilling, happier life, despite having MS.

Posted in MS and Emotions

A Brief History of Multiple Sclerosis

Posted on by 12 comments

Medical Research, Google Images
Multiple sclerosis has been around for ages, but only within the past two hundred years has it been correctly identified and extensively researched in order to bring about a world free of its ravages. Here are pivotal moments in the short timeline of multiple sclerosis knowledge:

1838: doctors’ autopsy drawings show changes in brain tissues, but MS is not yet identified

1868: A French neurologist, Dr. Jean Martin Charcot, tracks several patients with neurological symptoms such as tremors, slurred speech, walking difficulties, and muscle spasms. He examines one particular patient’s brain after her death and discovers multiple sclerosis “plaques” or scarring along nerve pathways.

1878: myelin, the protective covering of the nerves, is discovered by a Dr. Ranvier

1919: abnormalities in spinal fluid are discovered

1928: the cells that make myelin, oligodendrocytes, are discovered

1935: Dr. Thomas Rivers (U.S.) demonstrates an MS-like illness in rats when he injects them with healthy myelin and it produces an autoimmune reaction much like multiple sclerosis in the subjects. The animal variety of MS is called experimental allergic encephalomyelitis, or EAE. This opens up the idea that MS is caused by an incorrect autoimmune response, not soley by a viral or bacterial infection.

1946: the National Multiple Sclerosis Society is started in the U.S. by Sylvia Lawry, a woman whose brother has the disease

1948: oligoclonal bands are discovered in spinal fluid and they become a criterion for positive multiple sclerosis diagnosis

1965: a correlation between elevated white blood cells and MS activity is made

Read more »

Posted in Basic Info

Everyone Go Over to Joan’s Chat Room!

Posted on by 5 comments

Just a brief plug for Joan’s chat room. Her “A Short in the Cord” blog has a link to Friday night chats, which originally started as a place for Delaware MSers to convene. The schedule is two Fridays a month, and the next one is coming up this Friday (the 26th.)

I logged on during Sept.12th’s session and was greeted by Joan and two other ladies. Joan and (I believe) Nightmare stayed on and we rapped about our health, where we live, different MS societies and other MS associations, and support groups. Of course there were also jokes and laughs. I had never experienced a chat room and was fumbling to type fast enough (I look at the keyboard and my hands.) No matter— the errors were half the fun!

Check out Joan’s blog homepage for more info (upper right corner.) It would be cool to actually converse in real time and start some interesting discussions.

Posted in News / Research

Multiple Sclerosis and Feeling GOOD

Posted on by 13 comments

Joy, Google ImagesI’m sitting at my computer, imported beer at my side, and I’m thinking back about my day: my family and I took a lunch cruise that started in the Hudson River, swung down around Battery Park, and headed up the East River. There were four enormous waterfalls that an artist created along the shorelines of the East River. One actually stood underneath the Brooklyn Bridge. Fantastic. My cousin booked this excursion, and the majority of folks on the cruise were there for the live gospel performance. So live music, good food, great sights, a boat ride, and family. A unique trip that I ordinarily wouldn’t do. When do I listen to gospel music? Nevertheless, I found myself thinking, “I’m living well with MS.”

When it’s quiet and the dishes are all done, the plump cat is fed, the husband is napping, and I’m left with my thoughts, I realize that I feel…..well…..GOOD. Multiple sclerosis is pretty much a coin with unpredictable odds. Heads: you feel lousy and curse the world. Tails: you actually feel your personal best. Stories of struggling are much more common, since people need to reach out and find others’ support. But how many people announce that they have MS and they presently feel good?

I have two personal friends with multiple sclerosis. One has benign MS, and has very little day-to-day problems. The other one has a more progressive form. I am smack in the middle of both situations. I am moderate, and when I feel awful, I plunge to the depths of MS despair and rottenness. But when it remits, I am back to being a relatively functional person. Most of my symptoms remit, and those that don’t (bladder/bowel stuff, some fatigue, and left leg weakness) usually become manageable. I am currently in a position where I can relax a wee bit about money. My home is now my office. The monkey on my back has gotten off (probably to pester some other defenseless MSer.) When I speak to either of my MS friends, I tell them this and the one with mild MS is overjoyed, and the one with progressive MS is….. also overjoyed. They both want my personal happiness.

If you have MS and you are in remission, you’re having a great day, or you just want to celebrate yourself, then CELEBRATE! Your family and friends want your happiness. That’s why they love you so much. Now go tell everyone how good you feel.

Posted in My Own MS Journey

Local MS Walk News

Posted on by 2 comments

MS Walk, Google Images

I got this email today from my local MS Society chapter. I volunteered at one of the Walk MS events in April 2008. Keep in mind that the funds raised are from ONE chapter. It’s great to see so many people coming out and supporting the cause– thanks to all of the walkers and participants who raised pledges!

September 2008

Dear MS Walk participants:

For those of you who participated in Walk MS 2008, congratulations on your hard work and dedication to creating a world free of MS. Walk MS 2008 raised over $1.1 million – thanks to all of you! And, be sure to save the date for Walk MS 2009-Sunday, April 19th. I hope that you all will “join the movement” so that we can continue on our important journey to help more and more people with MS.

You have all done an amazing job over the years and we cannot thank you enough!!

Sincerely,

Patricia Tupycia, Director, Walk MS & Corporate Relations

Posted in Fundraising Info

Bearing the Multiple Sclerosis Load

Posted on by 5 comments

I’ve read the blogs at Blogspot and have seen lots of people dealing with stress, out-of-control symptoms, depression, financial strain, non-MS illnesses, and other things outside of the MS realm. I’m not a believer in organized religion, although I do believe in a force greater than ourselves. I like this well-known poem about faith:

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there has only been one set of footprints in the sand.
Why, when I needed you most, had you not been there for me?”
The Lord replied,
“The times when you have seen only one set of footprints in the sand
are when I carried you.”

The Lord is not above, watching and playing Russian roulette with everyone’s lives. Allah and Buddha are not waiting for everyone to repent so that illnesses will go away. The greater power and magnificence lie within each of us. We are all a bit of divinity, and we are here to bear one another’s burdens. I cannot answer why some people have far worse cases of MS than others. I cannot fully know your life’s burdens. But I can carry your story of fear with me to the grocery store while I’m shopping for eggs. You in turn can bear my story of anxiety for the future as you go about your day. I can shoulder the pain of your MS symptoms, if only in mind and not body. Look here on earth for your divinity and many folks will be standing in line to lighten your load.

Posted in Blog
« Older Entries Recent Entries »