FAQ’s

 

Mayo Clinic staff, Rochester MN "Multiple sclerosis (MS) is a disease in which your immune system attacks the protective sheath (myelin) that covers your nerves. Myelin damage disrupts communication between your brain and the rest of your body. Ultimately, the nerves themselves may deteriorate, a process that's currently irreversible. Signs and symptoms vary widely, depending on the amount of damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others experience long periods of remission during which they develop no new symptoms. There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms."
Mayo Clinic Staff Rochester, MN "Signs and symptoms of multiple sclerosis vary, depending on the location of affected nerve fibers. MS signs and symptoms may include:
  • Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or the legs and trunk
  • Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
  • Double vision or blurring of vision
  • Tingling or pain in parts of your body
  • Electric-shock sensations that occur with certain neck movements, especially bending the neck forward
  • Tremor, lack of coordination or unsteady gait
  • Slurred speech
  • Fatigue
  • Dizziness
  • Problems with bowel and bladder function
  • Disease course
Most people with MS have a relapsing-remitting course, with new symptoms (relapse) that develop over days or weeks and usually improve partially or completely, followed by a quiet period (remission) that can last months or even years. Small increases in body temperature can temporarily worsen signs and symptoms of MS, but that type of event isn't a relapse. About 60 to 70 percent of people with relapsing-remitting MS eventually develop a steady progression of symptoms, with or without periods of remission (secondary-progressive MS). The worsening symptoms usually include problems with gait. The rate of progression varies greatly among people with secondary-progressive MS."
Excerpt from The Multiple Sclerosis Center at John Hopkins: MS is unpredictable and affects each patient differently – some individuals may be mildly affected, while others may lose their ability to write, speak or walk. There are several courses of multiple sclerosis that have been described:
  • Relapsing-Remitting Multiple Sclerosis (MS)
At the time of diagnosis, 90% of patients will have relapsing-remitting course of disease. This form of multiple sclerosis is characterized by the onset of the neurological symptoms over a period of hours to days. Common symptoms of a relapse may include: Fatigue Numbness Tingling Blurred vision, double vision or loss of vision Unsteady gait Weakness These symptoms tend to persist for days or weeks, and then disappear partially or completely on their own or with treatment. Patients may then remain symptom-free for weeks, months or even years (known as remission). Without treatment, most people with MS will develop disease symptoms that will gradually worsen over time (known as relapsing).
  • Secondary Progressive Multiple Sclerosis (MS)
If the relapsing-remitting condition changes to a point where there are no discernable relapses and remissions; the course of the disease has transitioned to secondary progressive MS. All those with secondary progressive MS began the disease with a relapsing-remitting disease course. In secondary progressive MS, symptoms accumulate and worsen without any remission. There may be periods where symptoms are stable, but the overall course is one of worsening over time. Often an individual will describe a change in their abilities when comparing current function to past function but without identifying an episode that led to the worsening. Sometimes, after the onset of secondary progressive MS an individual may experience a relapse. The course would then be considered secondary progressive MS with relapses.
  • Primary Progressive Multiple Sclerosis (MS)
About 10-15% of patients will have gradual worsening from the start of their MS disease. This is referred to as primary progressive MS. People with primary-progressive MS describe a gradual change in mobility; often walking, over time. They often describe heaviness and stiffness in the lower limbs. People with primary-progressive MS almost never have an exacerbation (relapse). If a relapse occurs after a primary progressive course is well established, the pattern is known as Progressive-Relapsing MS.
  • Benign Multiple Sclerosis (MS)
Benign MS is a mild course where an individual will have mild disease after having MS for about 15 years. This occurs in about 5-10% of patients. There is no good way of predicting which patients will follow this course. The only way to identify benign MS is AFTER someone has had the diagnosis of MS for at least 15 years and has had no evidence of worsening (both in functional ability and as evidenced on the MRI). Benign MS cannot be predicted at the time of diagnosis or even after a few years with MS.
Mayo Clinic staff, Rochester MN There are no specific tests for MS. The diagnosis relies on ruling out other conditions that might produce similar signs and symptoms. Your doctor is likely to start with a thorough medical history and examination. Your doctor may then recommend:
  • Blood tests, to help rule out infectious or inflammatory diseases with symptoms similar to MS.
  • Spinal tap (lumbar puncture), in which a small sample of fluid is removed from your spinal canal for laboratory analysis. This sample can show abnormalities in white blood cells or antibodies that are associated with MS. Spinal tap can also help rule out viral infections and other conditions with symptoms similar to MS.
  • MRI, which can reveal areas of MS (lesions) on your brain and spinal cord. You may receive an intravenous dye to highlight lesions that indicate your disease is in an active phase.
Evoked potential tests These tests record the electrical signals produced by your nervous system in response to stimuli. An evoked potential test may use visual stimuli or electrical stimuli, in which you watch a moving visual pattern or short electrical impulses are applied to nerves in your legs or arms. Electrodes measure how quickly the information travels down your nerve pathways.
Mayo Clinic staff description "There is no cure for multiple sclerosis. Treatment typically focuses on speeding recovery from attacks, slowing the progression of the disease and managing symptoms. Some people have such mild symptoms that no treatment is necessary. Treatments for attacks
  • Corticosteroids, such as oral prednisone and intravenous methylprednisolone, are prescribed to reduce nerve inflammation. Side effects may include insomnia, increased blood pressure, mood swings and fluid retention.
  • Plasma exchange (plasmapheresis). The liquid portion of part of your blood (plasma) is removed and separated from your blood cells. The blood cells are then mixed with a protein solution (albumin) and put back into your body. Plasma exchange may be used if your symptoms are severe and haven't responded to steroids.
  • Treatments to modify progression
No therapies have shown benefit for slowing the progression of primary-progressive MS. For relapsing-remitting MS, certain medications can lower the relapse rate and reduce the rate of formation of new lesions, particularly early in the disease course. The options include:
  • Disease Modifying Therapies (DMT's)
    • Beta interferons. These medications, which are injected under the skin or into muscle, can reduce the frequency and severity of relapses. Beta interferons can cause side effects such as flu-like symptoms and injection-site reactions. You'll need blood tests to monitor your liver enzymes. (Examples of interferons include: Avonex, Betaseron, Extavia, Plegridy & Rebif)
    • Glatiramer acetate (Copaxone). This medication may help block your immune system's attack on myelin. The medication must be injected beneath the skin. Side effects may include skin irritation at the injection site.
    • Dimethyl fumarate (Tecfidera). This twice-daily oral medication can reduce relapses. Side effects may include flushing, diarrhea, nausea and lowered white blood cell count.
    • Fingolimod (Gilenya). This once-daily oral medication reduces relapse rate. You'll need to have your heart rate monitored for six hours after the first dose because your heartbeat may be slowed. Other side effects include high blood pressure and blurred vision.
    • Teriflunomide (Aubagio). This once-daily medication can reduce relapse rate. Teriflunomide can cause liver damage, hair loss and other side effects. It is also known to be harmful to a developing fetus.
    • Natalizumab (Tysabri). This medication is designed to block the movement of potentially damaging immune cells from your bloodstream to your brain and spinal cord. The medication increases the risk of a viral infection of the brain called progressive multifocal leukoencephalopathy. It is generally given to people who have more severe or active MS, or who do not respond to or can't tolerate other treatments.
    • Mitoxantrone (Novantrone). This immunosuppressant drug can be harmful to the heart and is associated with development of blood cancers. Mitoxantrone is usually used only to treat severe, advanced MS. Treatments for signs and symptoms
  • Physical therapy. A physical or occupational therapist can teach you stretching and strengthening exercises, and show you how to use devices that can make it easier to perform daily tasks.
  • Muscle relaxants. You may experience painful or uncontrollable muscle stiffness or spasms, particularly in your legs. Muscle relaxants such as baclofen (Lioresal, Gablofen) and tizanidine (Zanaflex) may help.
  • Medications to reduce fatigue.
  • Other medications.
  • Medications may also be prescribed for depression, pain, and bladder or bowel control problems that are associated with MS."
There are many options when seeking a neurologist and here are a few suggestions that may help you get started in your search for the right "fit".
  1. Check with your primary care doctor.  It is likely that you will be referred to a specialist, in which case your job will be to decide if you like this neurologist.  Never be afraid to seek a second opinion if you just don't think you're getting the right care.  "second opinion" are the magic words to use when trying to see a particular doctor who may not be accepting new patients.
  2. Many people have found success by attending a local MS support group meeting and finding out from others who is known and liked in your community.  This makes your search very personal.
  3. Local neurologists specializing in MS might be preferable depending on your particular circumstances.  You can contact your local chapter  of the National MS Society (800-fight-ms)
  4. MS Clinics such as Mayo Clinic, Cleveland Clinic, Multiple Sclerosis Center at John Hopkins to name a few.  These clinics offer a comprehensive approach to diagnosing and treating MS.
There are numerous trials going on worldwide.  Finding them, qualifying and participating can be a complex process.  Here are a few websites to search if you are interested in learning more: