| MULITPLE SCLEROSIS COMMITTEE |
The LSPVA MS Committee Meetings are held the first Wednesday of every Month and we would like to see as many MSers attend as possible. Anyone wishing to attend should contact Eric or Robyn at 972-276-5252.
The MS Support Group at VAMC lives on
Having multiple sclerosis is, at times, still a stranger to me. I was diagnosed on Aug. 1, 2008, at Portsmouth Naval Medical Center, Virginia, while serving on active duty as the Public Affairs Officer of the Navy Expeditionary Logistics Support Group in Williamsburg, Va. For awhile I just sat and waited, convinced that my vision would correct itself just as suddenly as it had diminished. One year later, I’m still waiting – but I’m no longer sitting around. Click here
|
 |
| MS Committee Director: Penny cockerell |
|
|
NEWS:
MS Town Hall Teleconference - May 27
To recognize World MS Day on May 27, the MSF will host a MS Town Hall meeting on the topic “Filling Unmet Needs in the MS Community.” Dial in at 8 p.m. EST to contribute your thoughts on the topic and ask questions of our panel of healthcare experts, MS advocates, and MSF staff, who will also briefly share their opinions on important needs in the MS community and how to address them.
To participate, call in directly at (888) 550-5602 and enter 2344 1168. Register to get a meeting reminder by phone or by email by emailing editor@msfocus.org or by calling (800) 225-6495, ext. 145.
Established by the Multiple Sclerosis International Federation, World MS Day will occur on the last Wednesday of May every year. For more information about World MS Day visit
www.worldmsday.org.
| MSF Joins MS Technology Collaborative
For nearly a decade, MSF has helped to connect the MS community to assistive technologies (AT) through our Assistive Technology Program. We are pleased to announce that MSF has taken that commitment one step further by becoming an Affiliate Partner of the MS Technology Collaborative, a joint-effort between Microsoft, the National MS Society and Bayer HealthCare Pharmaceuticals. Created in 2007, the Collaborative is dedicated to helping people living with MS overcome cognitive, vision, and dexterity challenges through the use of AT.
The Collaborative’s home is www.MyMSMyWay.com, a comprehensive online resource built for the MS community by the MS community. With the guidance of a steering committee of nine people living with MS, MyMSMyWay.com has become a one-stop-shop for AT information and resources. Here, visitors can use the “Snapshot” tool, a short quiz that provides customized technology solutions based on each individual’s specific needs.
|
|
What Is Multip Sclerosis MS ?
Multiple sclerosis (MS) is a disease that affects the central nervous system (CNS): the brain, spinal cord, and optic nerves. The damage caused by MS creates lesions or "scars" that can be seen on your brain and spinal cord. The process of developing lesions is called "sclerosis." So, MS actually means "many scars."
What happens in MS?
The CNS is made up of nerve cells that send signals to each other. Each nerve cell is covered with a protective coating called myelin . Myelin acts like insulation on an electrical wire. Myelin lets signals pass between nerve cells at high speeds. In MS, disease activity damages the myelin. This process is called "demyelination .
"This damage leads to a breakdown in the signal. The symptoms you experience with MS are a result of this communication breakdown. Disease activity can also damage the underlying nerve cell, leading to permanent symptoms and disability.
What causes MS?
The cause of MS is unknown. It is thought to be an autoimmune disease. Normally, the immune system helps fight foreign invaders such as viruses and bacteria. In an autoimmune disease, something triggers the immune system to attack the body itself. Some health care providers think that MS may be triggered by an infection—probably a virus. However, MS is not contagious.It is thought that this trigger activates a type of white blood cell called a "T cell." Once activated, the T cell starts to multiply. T cells cross the blood-brain barrier (BBB) to the brain and spinal cord. The T cells then begin a process that attacks and damages nerve cells in the CNS.
|
Who gets MS?
- 2.5 million people around the world have MS
- Approximately 400,000 people in the United States are diagnosed with MS
- More than twice as many women as men have MS
- Most people are aged between 20 and 50 years when they are diagnosed with MS
- MS is more common in people of Northern European descent, but people from all backgrounds get MS
You may be surprised to hear that people experience different types of MS.
But MS is different for everyone.
Relapsing MS
Approximately 85% of people with MS are diagnosed with a type of MS called relapsing-remitting MS (RRMS). In this type of MS, people have clearly defined periods when the disease gets worse. These periods are called relapses. Your health care provider may call them "attacks" or "exacerbations ." A relapse is when old symptoms worsen or new ones appear. For a symptom to be called a relapse, it must last for more than 24 hours in the absence of fever and be in some way disabling to you. Relapses may occur at any time, usually without warning, and can be mild or severe. In RRMS, relapses are followed by a long or short period of time when symptoms completely or partially go away. This is called remission . In RRMS, relapses are followed by periods of remission. Over time disability accumulates.
Secondary-progressive MS
Another type of MS is secondary-progressive MS (SPMS). Some studies have estimated that without
|
disease-modifying drugs (DMDs), one third to one half of people with RRMS would go on to develop SPMS 10 years after diagnosis. In SPMS, symptoms and permanent disability get progressively worse. Distinct relapses are less common, and remission periods are minor. In SPMS, symptoms and disability get progressively worse. Relapses and periods of remission are less common. Unfortunately, it is impossible for your health care provider to predict if and when you will go on to develop SPMS. The good news is that disease-modifying therapy may delay the development of SPMS.
Symptoms of MS
The course of MS is hard to predict. Symptoms may be constant. Or they may stop from time to time. Most people with MS have random patterns of attacks. Your doctor may call these attacks "relapses" or "exacerbations ."
Attack:
Any worsening of old symptoms or appearance of a new one. It lasts for more than 24 hours in the absence of fever. And it disables you in some way. Attacks may occur without warning. And they may be followed by a long or short period of complete or partial remission .
Remission:
When symptoms of MS may subside completely or partially for a period of time. Not all people with MS have the same symptoms. They vary from person to person. The type of MS symptoms you experience depends on where the disease activity is happening.
|
Symptom Management
The key to living with MS is to feel in control of MS. You can do this by keeping track of your symptoms, going to appointments with your health care provider, having regular magnetic resonance imagings (MRIs), and taking any medication your health care provider has prescribed.
The exact correlation between MRI findings and the current or future clinical status of patients, including disease progression, is unknown.
Following a well-balanced diet and a properly prescribed exercise program are also good foundations for health. Always talk with your health care provider or MS specialist before starting any symptom management program.
Staying on treatment
If your health care provider has prescribed a disease-modifying drug (DMD), it is important you follow your doctor's recommendations. The introduction of DMD's 15 years ago showed them as a breakthrough for people with relapsing MS. Since then 4 DMD's have been introduced to the market and have shown to slow the course of the disease.
If you are not taking a DMD, talk with your health care provider. He or she is there to help you. It's important that you communicate your needs. Together, you can go over the treatment options and decide whether DMD therapy is right for you.
Managing MS symptoms
It's very important for you to learn to listen to and take cues from your body. This will help you manage your MS symptoms.
When to call someone about your symptoms
You should ask your health care provider about when it is important for you to call. Some reasons to call may include:
- If you experience loss of vision or blurry vision
- If you have an abrupt change in bowel or bladder function
- If you think you have a urinary tract infection
- If you have feelings of depression or thoughts of hurting yourself
- Any time you are concerned about a symptom or feeling
This is not a complete list. Remember to check with your health care provider about when you should call
| Fatigue (Feelings of Tiredness)
Fatigue is one of the most common MS symptoms, occurring in nearly 80% of people with MS. Fatigue can feel like sleepiness or lack of physical or mental energy. Even though fatigue is common in MS, MS may not be the only reason you're feeling tired. Other factors that may cause fatigue are:
-
Weather: MS fatigue can be worsened by heat and humidity
-
Other medical conditions: Even something as simple as a minor infection can sap energy
-
Medications: Some medications can cause fatigue as a side effect. Make sure your health care provider has the most up-to-date list of all medications you are taking
-
Sleep problems: Problems falling asleep, staying asleep, or getting the right kind of sleep prevent people from feeling refreshed when they wake up
-
Depression and anxiety are common in MS. If you or others close to you notice changes in your mood or loss of interest in once-favorite activities, be sure to tell your health care provider
Dealing with fatigue
There are a number of options you can discuss with your health care provider to help reduce fatigue:
- Conserve energy—Rest whenever you can. Rest means doing nothing at all. By resting often you will leave strength for enjoyable activities. Plan and pace your activities. Set priorities. Focus on items that must be done. Learn to let go of any guilt that may be associated with not finishing tasks. And don't be afraid to rely on family and friends for some help.
- Occupational therapy— helps people maintain skills they need for everyday living at home or work. It can help simplify tasks at work and home.
- Physical therapy— helps people improve movement and function. Physical therapy and exercise can teach you energy-saving ways of walking (with or without assistive devices) and performing other daily tasks.
- Sleep regulation—may involve treating other MS symptoms that interfere with sleep (eg, spasticity, urinary problems) and using sleep medications on a short-term basis.
- Psychological interventions—such as stress management, relaxation training, membership in a support group, or psychotherapy.
- Medications—Talk to your health care provider about specific treatments that may help relieve fatigue.
|
Spasticity
Spasticity means muscle stiffness or spasms. The stiffness may be as minimal as muscle tightness and may not be bothersome at times. Or stiffness may be so severe as to produce painful, uncontrollable spasms. Sudden movements or position changes can bring on spasticity, as can muscle tightness, temperature, humidity, infections, or even tight clothing. Your hips, knees, ankles, shoulders, and elbows can all be affected. However, spasticity is much more common in the legs.
Left untreated, spasticity can lead to complications like "frozen" joints (called contractures) and pressure sores. These can also act as spasticity triggers. This means they can set off even more symptoms.
Dealing with spasticity
Spasticity varies from person to person. It should be treated on an individual basis. Reducing spasticity will give you greater freedom of movement and strength. Your health care provider can recommend ways to relieve the symptoms. He or she can also track your progress and may make referrals to other health care professionals such as occupational and physical therapists.
Exercise, daily stretching, and changes in activity are all ways to help relieve spasticity. Also, speak with your health care provider to find out if medication is an option for you. There may be treatment options available that can help you deal with spasticity.
Pain
More than half of the people with MS find that pain is a problem. Pain appears to result from "short circuits" in the pathways that carry sensory impulses between the brain and the spinal cord. It is not a predictor of the course of MS.
Pain can be broken into 2 categories: acute and chronic.
Acute pain
Trigeminal neuralgia
is a stabbing pain in the face. It can occur as an initial symptom of MS. It can be confused with dental pain. However, this pain is due to nerves.
Lhermitte's sign
is a brief, stabbing, electric shock-like sensation that runs from the back of the head down the spine. It can be brought on by bending the neck forward. It can be a signal of a loss of myelin in the neck region of the spinal cord.
Dysesthesia
is a burning, aching sensation that occurs around the body.
Chronic pain
Burning, aching, prickling, or "pins and needles"
Pain of spasticity,
such as tightness or aching in joints and muscle spasms or cramps—called flexor spasms—may occur.
Back and other musculoskeletal pain,
especially lower back pain, can have many causes. They include:
- Spasticity
- Pressure on the body caused by immobility
- Incorrect use of mobility aids
- Poor walking posture, unusual walking pattern, and balance problems
Dealing with pain
You do not have to suffer with pain. An evaluation to pinpoint the source of the pain is essential. Fortunately, there are a number of medications that can help. Speak to your health care provider for more information.
Nonmedication treatments may include exercise, heat, massage, ultrasound, and physical therapy. In addition, biofeedback, meditation, and similar techniques may be of help.
Bowel or Bladder
Some MS lesions can block or delay nerve messages that control the bladder. This can cause bladder problems. Bladder problems, which occur in at least 80% of people with MS, can usually be managed.
Bladder symptoms may include:
|
The most common bladder problem is called "spastic" bladder. That's when the bladder is unable to hold the normal amount of urine or does not empty properly. This can leave urine in the bladder and possibly lead to infection.
Constipation is another concern for people with MS. Constipation may be caused by too little fluid intake. It also may be caused by your intestinal tract slowing down. If you have become less active, you may become constipated. Certain medications used to control bladder symptoms may also cause constipation.
Dealing with bladder/bowel problems
One way to treat a bladder problem is to change your fluid intake (eg, limit fluid intake a few hours before bedtime, cut out caffeine). Also, your health care provider can prescribe medicine. It is important to get examined and treated early, so that you can avoid any complications, like bladder infections.
Here are some tips to help you deal with bowel and bladder problems:
Your health care provider can help you establish an effective bowel management program. Occasionally, it may be necessary to consult a gastroenterologist. He or she is a health care provider that specializes in treating the stomach and bowel.
Sexual Issues
Sexual issues are often experienced by people with MS. That's because sexual arousal begins in the central nervous system (CNS)—where MS strikes. If MS damages the nerve pathways to the sexual organs, sexual response—including arousal and orgasm—can be directly affected. Sexual problems may also stem from MS symptoms such as fatigue or spasticity. Psychological factors and mood changes may also play a role in sexual function.
Sexuality is an important part of life. If you are having sexual problems, please do not ignore them. Speak with your health care provider. It may be a difficult and embarrassing conversation, but it's worth it.
In women, symptoms include:
- Reduced sensation in the vaginal/clitoral area or painfully heightened sensation
- Vaginal dryness
- Trouble achieving orgasm
- Loss of desire or response
In men, symptoms include:
- Changes in arousal and response
- Difficulty achieving or maintaining an erection (by far the most common problem)
- Reduced sensation in the penis
- Difficulty achieving orgasm or ejaculation
- Loss of desire or response
Dealing with sexual problems
The key to a healthy sex life in any relationship is communication. Talk with your partner, as well as your health care provider. By exploring options and requesting information, you can maintain a satisfying sex life.
A variety of therapies treat sexual dysfunction. Men should speak with their health care providers about oral medications, injectable medications that increase blood flow in the penis, penile suppositories, inflatable devices, and implants.
Women can relieve vaginal dryness by using over-the-counter personal lubricants. Petroleum jelly should not be used because it is not water soluble and may cause infection.
Working together to find other ways to give and receive pleasure allows many couples to have satisfying sexual relationships. Couples can benefit from different means of sexual stimulation. The National Multiple Sclerosis Society (NMSS) suggests, for example, the use of a vibrator to help overcome impaired sensation. Abnormal sensations and spasms can often be controlled through the use of medication. If bladder problems exist, techniques such as reducing fluids 2 hours before intercourse and emptying the bladder prior to sexual activity are helpful.
|
Vision
Vision problems are not uncommon in people with MS. But they rarely result in total blindness.
Optic neuritis
is inflammation of the optic nerve. This is the nerve that transmits light and visual images from the eye to the brain. Approximately half of people with MS will have at least one episode of optic neuritis. Frequently, it is the first symptom of MS. Optic neuritis may result in blurring or graying of vision, or rarely, blindness in one eye. A dark spot may also occur in the center of the visual field.
Nystagmus
or uncontrolled horizontal or vertical eye movements, is another common symptom. Nystagmus may be mild, only occurring when the person looks to the side. Sometimes it may be severe enough to impair vision.
Double vision (diplopia)
occurs when the pair of muscles that control a particular eye movement are weak. The muscles then become uncoordinated. When the images are not properly fused, the patient sees a double image. Double vision may increase with fatigue or overuse of the eyes.
Dealing with vision problems
The good news is that these vision problems are usually temporary. Patients generally recover. Steroid treatments may be useful for optic neuritis and nystagmus. Resting the eyes periodically throughout the day and/or wearing an eye patch can be helpful for double vision. Speak with your health care provider if you experience vision problems.
Walking & Balance
Problems with walking (also known as gait) are fairly common in MS.
They may include:
- Muscle weakness—can cause toe drag, foot drop, and other gait abnormalities
- Spasticity—can interfere with walking
- Loss of balance—can cause swaying and a "drunken" type of gait known as "ataxia"
- Numbness—can occur in the feet. Numbness can make a person with MS unable to feel the floor or know where his or her feet are. This is called "sensory ataxia"
- Fatigue—many people will experience problems when fatigue increases
Dealing with walking problems
Exercise, physical therapy, walking aids, and, in some cases, a review of your medications can help. Each person's walking issue needs to be examined on an individual basis. Make sure you are carefully evaluated by a trained health care professional.
| Memory
Memory loss is the most common mental change in MS. It can occur at any time in the course of your MS. Even if you do not have physical signs of the disease, you may experience memory loss. Some examples of memory loss are:
- Forgetting names, telephone numbers, recent conversations
- Difficulty remembering what you just learned
- Not knowing why you entered a room
- Losing or misplacing things
There is no clear proof the memory problems are due to damage in any single area of the brain. However, evidence does suggest that memory problems:
- Occur when there are many lesions in different areas of the brain
- Are a result of the breakdown in transmission of nerve impulses responsible for the ability to remember
There are 2 types of memory loss:
- Recent memory: newly learned information such as names of people you just met. It also includes things you are trying to remember for the future like a telephone number or taking your medication. Recent memory is most often affected by MS.
- Remote and procedural memory: information or a skill you learned a long time ago (eg, riding a bike). This type of memory is not as likely to be affected by MS.
Dealing with memory loss
You may want to be tested if you think you have memory loss. Talk with your health care provider about what you are experiencing and possible treatment options.
One common treatment option is rehabilitation. This means that you use memory exercises to help "retrain your brain."
There are different techniques you can try to help you remember:
- Do things when you think of them because you may forget later.
- Assign spots for items and always return them to where they belong.
- Use checklists so you remember what you need to do.
- Treat yourself to a new gadget, such as an organizer, PDA, or journal, to help you remember.
- Prioritize; focus on only the most important things of the day.
|
Tips for Beating the Heat
During the hot summer months, everyone is looking for ways to stay cool, but staying out of the heat is especially important for people with multiple sclerosis (MS). Many people with MS find their symptoms are aggravated; therefore anyone with MS should take extra precautions to stay cool.
MS LifeLines® Ambassador Michelle, an avid athlete who has competed in triathlons, marathons, and bike racing, has been living with relapsing MS since 2001. Michelle learned to modify her training and competing in order to deal with the hot weather by adapting her schedule. Instead of training in the middle of the day, she works out at night or in the early morning when the weather is cooler. She also makes sure to hydrate with plenty of liquids, sometimes even pouring water on herself during her rides to keep cool. Like Michelle, whether it is participating in sports or spending time with family outdoors, you do not have to let the summer heat stop you from doing what you love.
The following tips list easy ways to beat the heat:
- Use your air conditioner. This is one of the easiest ways to stay cool. Even if you don't have air conditioning in your home, go to a mall, a library, or any place that has air conditioning and enjoy theirs!
- Don't go outside during the hottest times of the day. Instead, get out early in the morning before it has gotten too warm or at night, when things have cooled down. Also, be sure to stay out of the direct sun.
- Drink lots of water. Carry an insulated water bottle to all of your summer activities. Many people with MS make the mistake of cutting back on water to accommodate their bladders, but this can lead to dehydration. Instead, plan trips to the bathroom or use medications directed by your doctor to control this symptom.
- Wear cotton clothing. Cotton allows the skin to breathe, which can provide comfort in the hot weather. There are also several products designed to keep your body cool, including cooling vests.
- Take cool showers or baths or go swimming. This will lower your body temperature and feel great!
- Talk to your doctor about tips and specific suggestions for dealing with the heat.
To read more tips about living well with MS, visit www.nationalmssociety.org.
Our tips are for your reference and may or may not be right for you. As always, be sure to talk with your doctor about anything regarding your MS treatment.
| Depression
Depression is a widespread problem, occurring not just in people who have MS. It's important to understand that depression is a term used broadly when it comes to people with MS. It is often used to describe a wide range of emotions, from feeling down for a few hours one day to clinical depression, which may last for months. People with MS, as well as their friends and family, need to know that depression, in whatever form, is common.
Depression does not mean that you are "weak." You should not feel ashamed about being depressed or feel the need to hide it. You cannot control or prevent depression.
We still do not fully understand the nature of depression in MS. But, in recent years, we have learned much about it:
- Stress is a major factor in depression. The stress of dealing with a diagnosis of a chronic disease and the possibility of disability can bring on depression.
- The disease process of MS may cause depression. If MS damages areas of the brain that are involved in emotional expression and control, a variety of behavioral changes can result, including depression.
- Depression may also be associated with MS-related changes that occur in the immune or neuroendocrine systems.
- Depression can also be a side effect of some medications.
People with MS often go through a period of grieving. They may grieve the losses they experience due to MS, such as walking or working. This mourning may look like depression. Grief eventually goes away on its own. So, it's important to recognize the differences between mild, everyday "depression"; grief; and clinical depression. Clinical depression is a serious condition that can last from at least 2 weeks to several months. It produces flare-ups known as "episodes."
Symptoms of a major depressive episode
- Sadness
- Loss of interest or pleasure in everyday activities
- Loss of appetite or increase in appetite
- Sleep disturbances, either insomnia or excessive sleeping
- Agitation or slowing in behavior
- Fatigue (feelings of tiredness)
- Feelings of worthlessness or guilt
- Problems with thinking or concentration
- Persistent thoughts of death or suicide
Dealing with depression
Depression can be diagnosed only by a health care professional. Therapy or medication may be needed. A health care professional can treat the condition and prevent an even deeper depression that is harder to treat. It may be necessary to try different medications and different doses before an effective medication, or combination of medications, is found. If you suspect you are suffering from depression, please talk with your health care provider. He or she can get you the help you need.
|
The Importance Of Your MRI Scan
Understanding MRI imaging in MS
MRI is used to help diagnose MS. It can be helpful in managing MS, too. Some people with MS avoid MRI scans. They do not want to "see" their chronic disease activity. But it's important to know how much disease activity is happening in your body.
MRI can be more than a diagnostic tool. Regular, repeated MRI scans can help your doctor manage your MS by monitoring disease activity. The scans are noninvasive and can be used many times over the years. Your doctor can compare results of one MRI with another. This helps your doctor monitor disease activity and track disease progression.
Two types of MRI scans commonly used in MS are:
- T1-weighted scans with gadolinium (Gd) enhancement: reveal new, active lesions
- T2-weighted scans: show both the activity and area of new lesions as well as older inactive lesions
Together, these MRI scans can give a comprehensive picture of short-term and long-term disease activity.
How MRIs detect MS lesions
In MS, an MRI is used to take detailed pictures of the brain and spinal cord. MRI scans show the amount of water in tissues. MS lesions have higher-than-normal water content. MRI uses a very large and very strong magnet to find these lesions. It takes detailed pictures of the central nervous system (CNS). These pictures show the areas of damage.
Lesions cause MS symptoms. How your symptoms affect you depends on where the lesions form in the brain and spinal cord. For example, a lesion in the spinal cord may cause limbs to be numb. Yet, many lesions, even large ones, are often "clinically silent." That means they don't produce symptoms.
The more lesions you have, the more damage may occur. The more damage, the higher your risk of disability.
MRI can show you and your doctor how well your treatment is working
MRI scans are also an important part of managing and treating MS. It can help you and your doctor see the progression of your disease and how well your treatment is working.
For example, if you are taking a medication and your MRI scan shows an increase in lesion activity, you and your doctor may want to discuss a better treatment option for you. Also, by using MRI regularly, your doctor can see how your MS is progressing — even when you're not feeling symptoms. However, it is important to note that MRI results and a patient's symptoms and disability status may or may not match.
MRI is noninvasive. It can be used many times over the years. This allows your doctor to compare results from one MRI to another and monitor the progress of the disease.
The exact correlation between MRI findings and the current or future clinical status of patients, including disability progression, is unknown.
Talk to your doctor about having regular, repeated MRIs.
Your doctor might want you to get an MRI scan. He or she will send you to an imaging center or a hospital near you. A technician will perform an MRI scan. A written report is then sent to your doctor. This report will help your doctor choose the right treatment. Having regular, repeated MRIs will help you manage your MS better and take a more active role in your treatment.
|
|