"Hearing that there is a Cure for MS"
Jacksonville, FL, USA
female, age 53
Speaks: german, spanish, italian, english
Joined Jan 6, 2006
Simple is the Best with MS
Simple is the Best with MS
Q: What is MS?
A: MS is a chronic disease of the white matter of the central nervous system (CNS). MS affects more than 400,000 people in North America. The disease usually starts between the ages of 20 and 40 years, with an average age of onset around 30. MS affects more women than men. In MS, there are patches of inflammation in the brain and spinal cord that cause damage to the myelin. This makes it more difficult for information signals to travel along nerve fibers with the required speed, eventually causing the symptoms seen in MS.
Q: What are the different types of MS?
A: The course the disease takes in any one individual enables us to make a rough distinction between different types of MS:Relapsing Forms of MS Relapsing-remitting MS: This type shows clearly defined relapses with some amount of recovery. It affects around 60% of all people with MS.
Secondary progressive MS: While technically a form of progressive MS, this type acts more like a relapsing form of MS in its early-to-mid stage, with relapses and remissions being quite common. But then a more gradual loss of physical and cognitive functions starts to take over, and relapses become less common. It is estimated that about one-third of people with MS have this form of the disease. Roughly two-thirds of people with secondary progressive MS have relapses and thus also fall within the definition of relapsing MS. Progressive MS Primary progressive MS: This type shows no relapses, but over a period of years, there is gradual loss of physical and cognitive functions. This form of MS affects about 10% of all people with MS.
Q: Is there a cure for MS? Are scientists close to a cure?
A: There is currently no cure for MS, but it is treatable. You should talk to your doctor about your treatment options.
Q: How is MS diagnosed?
A: A diagnosis of MS usually begins with a thorough neurological examination and a discussion of your full medical history with your physician. However, even after this, it may still be difficult, if not impossible, to confirm the presence of MS without using advanced diagnostic procedures. The most commonly performed laboratory tests are: MRI scan
Measuring "evoked potentials"
Q: How do I know if I have MS?
A: The only way to know if you have MS is to consult your doctor. He or she may ask you questions or perform different tests to determine if you have MS.
Q: What causes MS?
A: Despite a great deal of research, we still do not know what causes MS. In general it is thought that MS is caused by a combination of factors. It is likely that people with MS are, to a certain extent, prone to develop the disease (that is, it is something that they inherit). Then some unknown environmental factor may trigger the immune system to attack the white matter of the central nervous system.
Q: Are there any environmental factors that cause MS?
A: Yes, scientists consider the following to be possible environmental factors that trigger MS:Climate MS does not occur as frequently in every country throughout the world. MS most commonly affects Caucasians, particularly in North America, Europe, and Australia. The differences are not as great as we used to think. We do know, however, that in both the northern and southern hemisphere, MS is more frequent the farther away a country is from the equator. This applies to regions within a country itself. For example, in the US, the incidence of MS is much higher in northern states with temperate climates (seasonal changes) than in warmer southern states.Some studies suggest that there may be a connection between where a person lived for about the first 15 years of his or her life and the incidence of MS. For example, children up to age 15 who move to another area where there is a higher or lower risk for MS become as likely to get MS as people who have always lived in that area. But, people older than 15 who move, remain as likely to get MS as if they had not moved. Viruses A great deal of research has investigated the links between MS and all kinds of viruses. As yet there has been no reliable proof of any specific virus being responsible for MS. A likely possibility is that MS is the result of a response to several outside factors, such as viral infections, in a person who may be susceptible to MS based on his or her genetic makeup.
Q: Is MS hereditary? Will my children have MS?
A: We know that MS is hereditary to a limited extent. The results of studies of identical twins have mainly brought this to light. If a sickness is completely hereditary it should always affect not just one of the twins but the other as well. The chances of this happening with MS are not 100% but about 30%. Family members of someone with MS have a somewhat higher risk of contracting the disease than someone who does not have a family member with MS. In addition, MS most commonly affects Caucasians. This could also point to a hereditary factor among the causes of MS. At the moment we know that, for some hereditary diseases, it is possible to point to the exact place where the hereditary factor can be found in our genetic material, the chromosomes. Unfortunately, researchers have not yet found the location of the hereditary factors involved in MS. We have already seen that if there is a person with MS in the family, the other family members could have a slightly higher risk of contracting the disease. A woman with MS, therefore, runs a slightly higher risk that her child will also get MS at a later stage than does a woman without MS. Most people find that the risk is so slight that it is no reason to give up the idea of having children.
Q: What are some of the symptoms associated with MS? Why are my symptoms different from other people with MS?
A: The symptoms caused by MS are extremely varied and differ from person to person. It has a lot to do with where the inflammation and demyelination are situated in the central nervous system. Some symptoms occur very often, some are seldom seen. The effects that all these symptoms have on the quality of life vary a great deal. A lot depends on how you experience symptoms and how you are able to cope with them. In the course of time, you do learn to cope and to compensate by doing things you are still capable of doing. It is a process that requires some time and effort on your part, and on the part of those around you, including friends and family. Symptoms may include optic neuritis, loss of muscle strength in arms and legs, symptoms affecting the sense of touch, pain, symptoms affecting the muscles controlling the bladder and bowel, sexual problems, loss of balance and coordination, fatigue, impairment of cognitive function, and mood changes.Optic Neuritis This is an inflammation of the optic nerve, the nerve that controls the eye. Over a period of 1 or 2 days, you may develop blurred vision. Sometimes you may feel pain behind your eye, which increases when you turn your eye. There is gradual improvement, sometimes after several weeks. But recovery is not always complete. During periods of stress, when you are tired, or when you have a fever it may happen that you get blurred vision in the eye again. This does not necessarily mean that the MS is active again, rather it may be the result of permanent disability that has accumulated over time. Loss of Muscle Strength in Arms and Legs The nervous system contains large numbers of nerve fibers that control movement - what we call motor function. Often, MS is active in this system. Many people with MS lose muscular strength in the course of the disease. The loss can vary from reduced dexterity (the fingers no longer work so well) to actual paralysis. Loss of muscular strength occurs not only in the form of relapses (temporary attacks) but also as a gradual (progressive) process without recovery. Gradual loss of strength occurs more frequently in the legs than in the arms. Depending on the severity, you may need to use an assistive device such as a cane, crutches, or even a wheelchair. Symptoms Affecting the Sense of Touch There are also great numbers of nerve fibers in the nervous system that help you to feel things. Just like the symptoms of loss of muscular strength, symptoms affecting the sense of touch can be temporary (relapses) or more progressive. One type of symptom can be a "numb" feeling. Another type is a burning, tingling, or prickly feeling. These symptoms can occur in various parts of the body: sometimes in part of an arm or leg, sometimes in the lower half of the body from a particular point (e.g., the navel), and sometimes numb patches can occur all over the body. Pain MS can be accompanied by various kinds of pain. The symptoms involving the sense of touch can in themselves be painful. In addition MS often involves one of the nerves of the face becoming painful, a condition known as "trigeminal neuralgia." If you have difficulty walking because of MS, this can cause pain if your back and legs get overstrained. Loss of muscular power in the legs or arms can also lead to extra tension in the muscles: this is known as "spasticity" and can cause pain. The Muscles Controlling Bladder and Bowels At some time many people with MS have trouble urinating or completely emptying the bladder (this is known as "retention"). But more often it happens that urination starts immediately when the first signs of a full bladder are felt. This is known as "urge incontinence" or "urgency incontinence." It is also possible that you may have a combination of these conditions. There are fewer problems with bowel control. But because some people with MS move around a lot less, they can be troubled with constipation. Urge incontinence of the bowel - difficult to stop once the need is felt to empty the bowels - is less common. Sexual Problems You may also have problems in the sexual area, especially if you find it difficult to control your bladder or bowels. Men with MS can find it difficult to get or maintain an erection. In women, MS often causes a loss of sensitivity in the sexual organs, pain during intercourse, an inability to achieve an orgasm, or a reduction in the amount of lubrication produced during intercourse. This can put pressure on your relationship. Talking about these issues with one another can help, and may make you less tense when making love because you know that you are accepted by your partner for who you are. Balance/Coordination Part of the brain known as the cerebellum controls and corrects all the movements. Disturbances in this process can lead to difficulty maintaining balance or coordination. You may, for instance, have difficulty grasping small objects. This is often accompanied by a trembling of the hand (tremor). You may start walking as if you were drunk or you could have difficulty holding a pen properly and writing clearly. These problems too can be temporary (during a relapse) or they can be more permanent in a gradually progressive form of MS. Fatigue Fatigue or tiredness is a very common and well-known symptom of MS. But because fatigue can also be a sign of other diseases it is often not immediately spotted as being caused by MS. Fatigue can often last a few months during which your energy is used up every day after just a little effort. Fatigue occurs in relapsing MS and in the more progressive types of the disease. Cognitive Function Cognitive function, such as memory and speed of thinking, can become a problem early in the course of MS as well as in those who have had MS for a long time. You may also have difficulty concentrating: this can make it difficult for you to finish more than one job at a time. Mood Changes Depression is sometimes directly linked to MS. It may also be a reaction to having to learn to cope with MS. Feelings of depression should be discussed with your doctor because there are treatment options available.
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- Interferons: Avonex, Betaseron, Rebif
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MS "WHAT A PAIN"
RECOGNITION OF PAIN WITH MS
Yes, pain does occur in multiple sclerosis. However, recognition of pain as a genuine symptom of the disease has only come about in the past 10 or 20 years. The prevalance for MS pain syndromes is quite variable with estimates ranging from 10 to 80%.
Recent studies estimate that about half of people with MS will experience some type of pain during the course of their illness.There is no relationship between pain and the type of MS. Pain occurs equally in relapsing/remitting and progressive disease.
The cause of MS pain is dependent upon the type of pain syndrome. There are three categories or types of pain syndromes in MS: acute, subacute, and chronic.
Acute pain syndromes are often described as paroxysmal attacks, that is, sudden attacks of pain. They are time-limited, usually repetitive pain attacks lasting minutes or hours. The symptom is a result of abnormal conduction or "short circuit" along demylinated nerve fibres.
The nerve impulse may jump to adjacent demylinated sensory fibres causing a painful sensation. The most recognized acute pain syndrome is trigeminal neuralgia. It is a stabbing, shock-like pain usually extending from the ear to the mouth.
Pain can be provoked by facial movement such as speaking or chewing, but can also be caused by exposure to wind, temperature or touch.
Other acute pain syndromes include Lhermitte's symptom (electrical sensation passing down the back when you flex your head forward) and paroxysmal (brief) pain in the arms and legs. These symptoms are usually triggered by touch, movement or even hyperventilation (rapid breathing).
When treating acute pain syndromes with drugs, doctors turn first to anticonvulsant medication. Carbamazepine (Tegretol) is the first drug of choice. Other drug therapies include Gabapentin and Dilantin. These medications block abnormal conduction at the demylinated site in the central nervous system.
Unfortunately, because they block conduction they may cause worsening of other symptoms such as weakness or tremor. Medication side effects can be reduced if the drug is introduced gradually to achieve pain control or tolerance.
Generally, these acute pain syndromes are time-limited, but may last days to weeks. Many people will tolerate annoying medication side effects to manage their pain during this period.
Subacute pain syndromes are caused either directly from demylination or from a secondary source. They are also time-limited, lasting days to weeks. The most common direct subacute syndrome is the pain associated with optic neuritis. This is an aching, throbbing pain around or behind the eye provoked by eye movements.
This eye pain is probably the result of pressure on the meninges (pain sensitive tissue covering the brain) surrounding the optic nerve.
Treatment is often corticosteroids (Solumedrol or prednizone) to reduce optic nerve swelling.
Indirect MS pain would be painful bladder spasms associated with a neurogenic bladder or bladder infection. Pain can also result from frequent or prolonged treatment with corticosteroids and/or prolonged immobility. They can cause painful compression fractures of the vertabrae (backbone) or in pressure ulcers (sores).
Treatment focuses on specific symptoms - medications to relax the bladder or to treat infection - and education to prevent or reduce complications.
Chronic pain syndromes make up about 50 - 80% of all pain experienced in MS. Chronic pain can be both directly and indirectly caused by MS. There are two forms of chronic pain: neuropathic and musculoskeletal.
Central neuropathic pain is well recognized in MS and occurs in about 30% of people with MS. It is believed to be the direct result of demylination of the sensory pathways of pain and temperature. However, it is unlikely that a single sensory pathway is totally responsible. It is suspected there are multiple sensory pain pathways involved, but the exact mechanism is poorly understood.
The description of neuropathic pain varies and is often hard for people to describe. The most common description is a freezing or cold/burning sensation usually of the limbs and most often of the lower extremities.
Others describe the pain as deep, aching, throbbing or sqeezing sensations. Most agree this syndrome is very painful. Pain occurs spontaneously or can be provoked by touch, temperature or movement. Water from a bath or clothing touching the skin can provoke pain (this is called allodynia). For many people their pain is continuous with varying degrees of intensity and is usually worse at night.
When looking at drugs available to treat neuropathic pain, tricyclic antidepressants are the first choice of treatment. Of these, amitriptyline is most frequently used for its pain reducing and sedating properties. Similar drugs such as nortriptyline or desipramine are used when the side effects of sedation or dryness that can occur with amitriptyline are poorly tolerated.
Tricyclic antidepressants work because they block the normal function of serotonin. It is one of the chemical substances of the nervous system involved in nerve impulse transmission.
If these medications fail, then other therapies with anticonvulsants, narcotics or the antispacticity drug baclofen can be tried. Combined drug therapies may provide better relief, however, there is a greater risk for increased medication side effects.
Appropriate dosing is key in controlling neuropathic pain. Generally, people require high doses to achieve some benefit, and unfortunately, higher doses can result in more side effects.
Pain reduction can also be achieved with therapies that don't involve medication. These include stimulation techniques (either on the skin or surgically implanted devices), physiotherapy, relaxation and behavioral modification. Counselling can have additional benefits in providing coping strategies.
Most health care practitioners and people with MS would agree that neuropathic pain is the most difficult of pain syndromes to treat. The goal of therapy is to provide some control over the pain so the pain does not control one's life. Finding the therapy or therapies that work best can be a slow and difficult process. It is a matter of trial and error which is helped by an understanding that complete pain relief is unlikely.
Indirect Chronic Pain
Other chronic pain syndromes such as backache and painful leg spasms are an indirect result of MS. It is estimated that chronic back pain occurs in about 20% of people with MS. It generally affects the lower back and may radiate to hips and thighs. Factors such as poor posture in walking or sitting can put added strain on already wekened muscles of the lower back. Reduced mobility can accelerate degenerative disc disease. These factors may also contribute to localized joint pain.
Non-steroidal anti-inflammatory medication (NSAIDS) and physiotherapy are the two most effective treatments for chronic back pain. Therapy is important to provide stretching and strengthening exercises as well as correct posture.
An occupational therapist can assess proper seating for the work environment and wheelchair. Correct posture is very important in relieving mechanical stresses in the spine and surrounding muscles. Remember, your mother always told you to "Sit up straight"!
Spasms are associated with spasticity(muscle stiffness), but they are not the same thing. Spasms that cause drawing or pulling up of limbs are more likely to cause discomfort. These spasms often produce sensations of intense cramping or pulling.
Spasms are generally associated with increased disability and immobility, which also may lead to problems with constipation, bladder infections and pressure sores. These problems may aggravate leg spasms.
Painful spasms are best managed with anti-spasticity medication and physiotherapy. Anti-spasticity drug therapies help to relax muscle contractions by suppressing excitable neurons in the spinal cord.
In proposing possible medication for painful spasms, doctors often suggest baclofen, which remains the first choice of drug therapies. However, it may cause weakness and drowsiness. Dosing requirements are variable between people and should be introduced gradually to reduce side effects. Baclofen is taken orally, but in severe cases can be administered via a surgically implanted pump. Other drug therapies used to treat spasms are Zanaflex (tizanidine), diazepam and dantrolene.
Again, the important role of physiotherapy in managing limb spasms must be stressed. Therapists can educate people with MS, family members and caregivers on strengthening and stretching exercises. These exercises should be done daily for maximum benefit.
Pain is a common and at times very debilitating symptom of MS. It is a subjective symptom, which makes it difficult to assess and treat. The pain experience can be quite different between people, and what works for one may not work for another.
Given the complex nature of MS pain syndromes, the approach to effective management can involve many therapies and approaches with the hope to maintain function and quality of life.
Frequently, when talking with others with MS and in our own minds the issue of "what if" comes up. What if the time comes when I can't walk, can't use my hands, can't speak and the list goes on. The concerns are many. A lot of people have already faced those what ifs and life goes on.
What I want people to think about is that the "what ifs" may never happen, and you can spend too much time dwelling on these things and casting a dark shadow over your life now. Worrying and stressing over things that may never happen is a waste of great energy and is bound to affect your life day to day. If those worries become reality, deal with them then. And you will! And life can go on, in a forward direction. Don't be immobilized now by fear and worry.
You must make decisions based on your hopes and dreams keeping your capabilities in mind. But don't plan your future around a disease. Of course you take MS into consideration, but it can't be your deciding factor for things. An example of this is, that I am mobile, and if I was going to buy a new house, I wouldn't buy one with mega stairs, but neither would I look for one with a ramp and total accessibility already there.
Focus on what you can do and enjoy the moment instead of what you can't do. There is little we can do about "what ifs" anyway. What will happen will happen. Don't live waiting and worrying about something that may never come to pass. I know this is easier said than done. I especially understand those of you with small children. I consider myself very lucky that MS didn't find me until I was 39. Although my kids weren't all grown up, neither were they young. But don't dwell on inadequacies you think you have as a parent.
It's important for everyone to realize that the essence of any relationship has nothing to do with how well our arms and legs do or don't work, but it's what is at the heart and soul, that are the ties that bind.
I personally think that the MS experience has given my children an enhanced awareness of compassion for others, and of their own strength, hopefully better preparing them for whatever lies ahead.
It would be nice to see everyone live life to the fullest, move toward his or her dreams and not live under the dark cloud of "what if".
Count your blessings instead of your woes and live for what IS!
||Jan 6, 2006
||Meeting Friends, Support a Cause
|Group Host of
! What the Dying Teach Us: Lessons on Living !, * Hospice Care Support Group*, A Prayer Journal, All Natural HealthWorks!, Body + Soul, Cannabis... Fact, Fiction and Beyond, DAILY INSPIRATION, Disability Awareness, Disabled Support, HEALTH ISSUES of TODAY, Healing Lighthouse, Healthy Cooking, Healthy Living Network, Laurell K. Hamilton files more »
Jan 16, 1962
||LOVES ALOT OF DIFFERENT THINGS, I LOVE MUSIC, MY HUSBAND, EVERYONE I'VE MET THROUGH HAVING MS,MY FAMILY
||Introduce yourself to Jody
2 Jack Russels
Christian - Baptist
a lot of apple and tomatos,
should eat better,
lots of water,
Keep it Healthy,
TRYING TO BE HEALTHY - FAILING MISERABLY,
Almost anything... :)
|Wild Fact About Me
||I LIVE LIFE ON THE EDGE: IT'S NEVER DULL
||DON'T WAIT TILL TOMORROW~
|What Gives Me Hope
||HEARING THERE IS ANOTHER OPTION FOR MS PATIENTS
|If I were Mayor, I'd make the world a better place by
||I WOULD ALLOW EVERYONE TO SMOKE POT, WITH OR WITHOUT PAIN. MARRY WHO YOU WANT, AND NO MORE TAXES. LOWER RENTERS FEE'S,
|What/who changed my life and why
|What Bugs Me
People claiming friendship that are not!,
Any one that would hurt an animal,
any one that would hurt a woman,
Stupid mean people,
people who WON'T use their minds!,
people who don't "listen",
People who can't be their self,
Life - stop and smell the roses!
to fulfill my purpose on earth,
the sun coming up,
the sound of the ocean,
the beauty of nature,
a gentle breeze
|What Scares Me
I choose Love instead,
War - Cruelty - Greed - Indifference,
The moral direction of our society!,
Is how cruel the people of the world are,
Losing the ones I love,
Ignorance and evil,
Disrespect for others,
Criminals that a
||Get out of here~~~
R and B,
Six Feet Under,
Law and Order,
|Can't Live Without
||Introduce yourself to Jody
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