| The following is a list of questions to ask your doctor about multiple sclerosis (MS), as well as tips for preparing for these conversations. |
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| | MS is disease of the nervous system that primarily affects the brain and spinal cord. Symptoms develop when the protective covering surrounding nerves (myelin), which is necessary for the transmission of impulses, is damaged. Although the exact cause is unknown, MS is classified as an autoimmune disease because certain immune cells wrongly perceive the myelin coating as foreign and attack it, replacing it with scar tissue (hence the term "multiple sclerosis," or many scars). These scars (also called lesions) prevent the conduction of rapid electrical impulses and smooth coordinated movements. Doctors do not know what triggers the damage to myelin; they suspect environmental factors may trigger the disease in genetically susceptible people. The risk is higher among people with a close blood relative with the disease. |
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| How you can prepare for this discussion |
- Ask family members if anyone has been diagnosed with a neurological condition
- Make a list of all past and current medical conditions
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| | MS is a difficult disease to diagnose because some of its symptoms are also seen in other conditions. Currently there is no single test for MS, so doctors use a variety of methods to arrive at a definitive diagnosis. Your doctor will perform a physical and neurological exam to pinpoint obvious problem areas. Magnetic resonance imaging (MRI) scans can be used to visualize the brain and spinal cord and to look for lesions. Other tests might include evoked potential (EP) electrical tests, which measure how quickly your nerves respond to certain stimuli, and spinal tap (lumbar puncture) to look for certain immune cells and proteins in the spinal fluid. Classically, a diagnosis required two distinct episodes (attacks) occurring at least one month apart, but new criteria allow a diagnosis after a single attack. |
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| How you can prepare for this discussion |
- Make a list of all past and current medical conditions and their treatment
- Gather all past laboratory test results, medical procedures and surgeries
- Make a list of any potential symptoms, how long they lasted and when they first appeared
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| 3. What is the range of symptoms? |
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| | MS has a wide range of symptoms that can affect any part of the body. Symptoms will depend on where the lesions are located in the brain and spinal cord. Some lesions will produce severe symptoms and others will produce none at all. The following lists some of the more common symptoms of MS, but realize that you may experience less common symptoms as well.
- Changes in vision
- Numbness and tingling
- Unusual fatigue
- Muscle weakness
- Problems with movement or balance
- Dizziness
- Bowel and/or bladder disturbances
- Problems with memory, attention, and problem-solving
- Changes in sexual capability
- Pain
- Mood changes
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| How you can prepare for this discussion |
- Make a list of any notable physical and emotional problems, how long they lasted, and when they first appeared
- Ask family members if they have noticed any changes
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| 4. What type of MS do I have? |
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MS varies from person to person and rarely follows a predictable course. Treatment decisions are often made based on how your symptoms are progressing. The four classifications of MS are as follows:
- Benign (20% have this form)—Complete recovery after one or two attacks with symptoms that do not worsen over time, progress or cause disability.
- Relapsing-Remitting (25% have this form)—Clearly defined attacks with symptoms that come and go and may accumulate over time. People with this form of MS may go on to develop primary-progressive MS.
- Primary Progressive (12% have this form)—Symptoms steadily worsen over time with little or no periods of improvement.
- Secondary Progressive (40% have this form)—A later stage of the relapsing-remitting form of MS, where symptoms worsen steadily and may or may not have periods of improvement.
- Progressive-Relapsing (3% have this form)—Progressive worsening of symptoms from the beginning with evidence of attacks.
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| How you can prepare for this discussion |
- Keep a diary of symptoms and note if they return with regularity or worsen over time
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| 5. What are the treatments for MS? |
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| | Until recently, steroids were the only medication available for people with MS. They continue to be used to help manage individual symptoms, such as bladder problems or visual disturbances. Now there are new medications that can alter the course of the disease. Naturally occurring chemical messengers called interferons tell immune cells how to behave when the body is exposed to a foreign invader. In MS, they may help keep the cells and chemicals that damage myelin under control. Interferons (Avonex, Betaseron, Rebif) and Copaxone are currently the mainstay of MS treatment. They can reduce the number of new lesions found on MRI scans, reduce the degree of disability, and slow the progression of the disease. Other immune therapies such as Novantrone can be used for breakthrough disease. Medications may be given by injection into the muscle, under the skin, or into the vein. |
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| How you can prepare for this discussion |
- List all over-the-counter, prescription medications and dietary supplements you are taking
- List any drug allergies or difficulties with medications in the past
- List any personal preferences you may have about self-injections
- Note the name, dosage and side effects experienced with past or current medications
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| Supported through an unrestricted educational grant from Biogen Idec |
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