Frequently Asked Questions
1. What is multiple sclerosis (MS)?
MS is a chronic disease of the central nervous system (CNS) which affects both young people and older adults. The CNS includes the brain and the spinal cord.
2. Is MS an autoimmune disease?
MS is presumably an autoimmune disease. In this type of disease, the body’s immune system, which normally fights infections, inappropriately attacks parts of the body; in the case of MS, myelin (the protective sheath around the nerves) and axons (a part of the nerve itself) are the immune systems targets.
3. Does MS affect survival?
No, MS does not affect survival. With the current state of medical care and new treatments, MS patients have a normal life span.
4. What are the common symptoms associated with MS?
There is no single list of symptoms seen in MS patients. Some of the most commonly reported symptoms include numbness, tingling, pain, weakness, clumsiness, loss of vision, double or blurred vision, tremor, imbalance, urinary urgency and/or frequency, fatigue, depression and heat sensitivity. Each case must be carefully evaluated; the presence of any of these symptoms does not confirm the diagnosis of MS.
People with MS experience different symptoms resulting from demyelination -- the destruction of myelin (the fatty sheath that surrounds and insulates nerve fibers in the central system.) Throughout the course of the illness, an individual may experience any/all of the following symptoms, to a varying degree:
- Bladder Dysfunction
- Bowel Dysfunction
- Speech and Swallowing Difficulties
5. What is optic neuritis (ON)?
Optic neuritis (ON) usually involves decreased vision and eye pain that develops over a few days time. Vision usually returns (completely or partially) over a few weeks. The risk of developing MS after experiencing ON changes depending on if an MRI scan of the brain shows abnormalities. The doctor may therefore order a brain MRI scan to evaluate this risk of developing MS in a person who experiences ON.
Optic Neuritis can also be seen in many other diseases such as lupus or sarcoidosis. ON is not contagious. In patients who are already diagnosed with MS, ON is a relatively common symptom.
6. Does heat sensitivity make MS worse?
No. Exposure to hot ambient temperatures (a warm summer day, hot tub, etc) can make some MS symptoms worse, but does not worsen the disease itself. It is estimated that 30-40% of MS patients are heat sensitive. For this reason fever, hot baths, sunbathing, and heavy exercise may worsen some MS symptoms. These symptoms usually improve after the patient cools down.
7. What is transverse myelitis (TM)?
Transverse myelitis (TM) is an inflammation of the spinal cord. Symptoms are usually numbness and weakness of the legs, and difficulty urinating. Depending on where the inflammation is located in the spinal cord, TM can cause hand and arm numbness and weakness as well. TM is typically sudden in onset and reaches its peak within a few days. The risk of developing MS after experiencing TM changes depending on if an MRI scan of the brain shows abnormalities. The doctor may therefore order a brain MRI scan to evaluate this risk of developing MS in a person who experiences TM.
Transverse myelitis can be seen in many other diseases. In patients with who are already diagnosed with MS, TM can be a common symptom.
8. Do MS patients experience pain?
Pain is commonly reported by MS patients. Various types of pain that have been described in MS include: burning pain, electric shock-like sensations, deep continuous aching pain, pain related to muscle spasms, and band-like sensation in the chest or abdomen. Pain could be acute (sudden onset), chronic (persistent over a period of time), or episodic (off and on). Because pain from MS can be hard to distinguish from pain seen in other common disorders, it should be carefully evaluated before any recommendation of treatment is made.
9. Is fatigue common with MS?
Fatigue is one of the most common symptoms of MS and can be challenging to treat. It can affect a patient’s ability to work and interfere with day to day activities. MS fatigue can present as an overwhelming need to nap, as motor fatigue where a patient’s legs get tired quickly during walking, or as cognitive fatigue where it becomes hard to concentrate on a task for a long period of time. The patient may experience severe fatigue and yet appear quite normal to others.
10. What about coordination symptoms?
MS patients can develop clumsiness, poor balance and tremors in arms and/or legs. These symptoms can be very hard to treat.
11. Will I become weaker or stiff with MS?
Weakness is a common symptom of MS; it is due to a problem of the brain or the spinal cord, not from a problem with the nerves or muscles. It could involve one or both sides of the body and can be confused with a stroke. Spasticity, or limb stiffness, is commonly associated with MS weakness and can make moving a weak limb even more difficult. Fortunately, spasticity can be treated effectively with a number of different medications.
12. Does MS affect mental function?
Short-term memory loss and mild difficulty with thought processing can be seen in up to 45-65% of MS patients. These symptoms rarely progress to severe difficulties with memory and thought processing, such as those seen in Alzheimer’s disease.
13. Are mood disorders associated with MS?
Depression and mood swings are not unusual in MS. They can often be treated effectively with medications.
14. Can eye movement disorders occur with MS?
MS can cause many different kinds of eye movement abnormalities. These abnormal eye movements may result in double vision or blurry vision.
15. What is Lhermitte’s phenomenon?
This phenomenon is an electric shock-like sensation that travels down the back and into the arms or legs when the neck is bent. It is a common MS symptom, but can also be seen in other diseases affecting the upper spinal cord.
16. What are episodic symptoms of MS?
Episodic symptoms (symptoms that come and go) are common in MS. They are typically abrupt in onset, last only a short time and resolve on their own. They can occur several times a day and may include loss of balance, slurred speech, double vision, dizziness, painful tingling, electric shock-like sensations, or repeated muscle contractions. These episodic symptoms do not indicate the patient is having a seizure. (See Treatment).
17. Does MS affect the urinary system?
Urinary dysfunction is also a commonly reported symptom of MS. Different types of urinary symptoms seen in MS patients are:
• Urgency (inability to postpone urination once the need has been felt)
• Frequency (need to urinate more often)
• Incontinence (loss of bladder control)
• Hesitancy (trouble starting and maintaining urination)
• A combination of the above
18. What about bowel problems?
Bowel symptoms are common in MS, especially constipation. Bowel incontinence (loss of bowel control) may also occur, and may respond to treatments (See Treatment).
19. Are there sexual side effects?
Sexual disturbances commonly occur in MS. Symptoms include erectile difficulties, impaired vaginal sensation and lubrication, decreased libido and difficulty in achieving orgasm. Many of these symptoms may respond to medications.
Diagnosis of MS
20. How is MS diagnosed?
There is no single test that can diagnose MS. It is a clinical diagnosis, meaning the neurologist is able to make the diagnosis by evaluating the patient’s symptoms and neurological exam findings, and reviewing appropriate tests.
21. What are the tests used to diagnose MS?
The MRI of the brain and cervical spinal cord are the most important tests because more than 90 percent of the patients who have MS also have changes on MRI consistent with MS. Other useful tests to consider are the lumbar puncture (spinal tap) and evoked potentials (see below). Blood tests and in some cases a chest CT scan are needed to rule out other diseases which can mimic MS, such as lupus and sarcoidosis.
22. What if the brain and spinal MRI are normal?
If both the brain and spinal cord MRIs are normal, the diagnosis of MS, although still possible, is very unlikely. In this instance, a lumbar puncture may be recommended.
23. Is a lumbar puncture (also called a spinal tap) necessary to diagnose MS?
No, a lumbar puncture (LP) is not always necessary to confirm the diagnosis of MS. The LP is a relatively painless and simple procedure that can be done in the doctor’s office in about 15 minutes. It involves inserting a small needle into the lower back (local anesthesia is used to minimize discomfort) to obtain a small amount of fluid. This fluid, called cerebral spinal fluid or CSF, bathes the spinal cord and the nerves coming out of it. Almost 70-80 percent of MS patients have immunological changes in the spinal fluid. This means that 20-30 percent of MS patients do not have these changes.
24. What are evoked potentials (EP) tests used for?
Evoked Potentials are tests that measure the brain’s response to certain types of stimulation. They are less sensitive than MRI and LP in diagnosing MS but may still be helpful in certain situations. Three kinds of EPs are used by neurologists:
• Visual evoked potentials (VEP) look for abnormalities in the visual system, particularly the optic nerves.
• Brainstem auditory evoked potentials (BAEP) look for hearing abnormalities in the inner ear and the hearing centers in the brain.
• Somatosensory evoked potentials (SSEP) look for abnormalities in the transmission of sensation from an arm or leg through the spinal cord to the brain.
25. Which diseases can mimic MS?
The list of diseases with clinical symptoms or MRI results that mimic MS includes, but is not limited to:
• Sjogrën’s disease
• Vitamin B12 deficiency
• Lyme disease
• Behcet disease
• HTLV1 myelopathy
Each of these should be carefully evaluated as MS-mimicking diseases before confirming the diagnosis of MS.
26. What is the appropriate strategy for a patient suspected of having MS but with a normal exam and investigations?
Sometimes MS can take several months to years to be confirmed. In this situation, the patient should be followed periodically by the neurologist, and brain and spinal cord MRIs may need to be repeated.
Symptomatic Treatment of MS
27. Which MS symptoms can be treated?
MS is associated with a number of symptoms including vision difficulties, speaking and swallowing difficulties, weakness, numbness, pain, limb stiffness, clumsiness, tremors, bladder, bowel and sexual dysfunction, thinking and memory problems, depression, fatigue and episodic symptoms. These symptoms may affect a patient’s functioning and well-being. Fortunately, many of them can be treated.
28. How are ataxia and tremor in MS treated?
Ataxia (loss of coordination) is a difficult symptom to treat; there is no proven pharmacological therapy (medicine) for it. The current best treatment is physical therapy. Tremor is also a difficult symptom to treat; medications used for tremor may only be partially effective. These include clonazepam and mysoline. Several centers have studied the effect of a deep brain stimulator (a device implanted into the brain) on tremor. Some improvements in hand function were noted however the risks and benefits of this surgical procedure should be discussed with the neurologist.
29. What about testing for bladder problems or issues?
MS can cause many different types of bladder symptoms. Bladder symptoms can also develop from a urinary tract infection. In order to determine the cause of bladder symptoms, the doctor may perform some simple tests that can be done in the clinic.
• Urinalysis and culture to test for a urinary tract infection
• Evaluation of the amount of urine remaining in the bladder after urination
• Determination of the flow of urine per minute
These tests may not be enough to determine the cause of bladder symptoms and further investigations by the urologist may be required.
Treating bladder dysfunction involves both preventive and medication interventions.
30. Can bladder symtoms be prevented or improved?
Here are some steps you can take to improve bladder function:
• Optimizing fluid intake (six-eight large glasses of water a day)
• Scheduling times to urinate throughout the day
• Scheduling self catheterizations (if instructed to do so by the urologist)
• Making toilets more available (bedside commodes, portable urinals for both men and women)
• Pelvic muscle strengthening exercises (see Rehabilitation section)
• Recognizing skin rashes and improving skin care
Different medicines are available for different types of bladder problems. Clean intermittent catheterization might also be needed along with medicines in some cases. An evaluation from a urologist who understands bladder problems in MS may be very helpful as well.
In some specific cases surgical interventions on the bladder are also possible. These are usually done by a specialized surgeon.
31. What can be done to improve bowel problems?
• Optimizing fluid (six to eight large glasses of water a day)
• Optimizing fiber intake (20g/day)
• Encouraging defecation when the urge is felt
• Maintaining a regular schedule for bowel movements
There are also medication and mechanical measures for bowel issues including:
• Non-habit forming agents including bulk forming agents (psyllium) and stool softener (docusate sodium)
• Habit forming agents: oral stimulants (milk of magnesia, bisacodyl), rectal stimulants (suppositories, enemas)
• Digital rectal stimulation or mechanical removal in certain circumstances
32. Where can I learn more about bowel and bladder related issues?
For more information regarding the bowel and bladder issues, call or check online with the National Association For Continence, or call 1 (800) BLADDER.
33. What treatments are there for problems with thinking and memory in MS patients?
Cognitive dysfunction (problems with thinking and memory) can occur in 45-66 percent of MS patients. The most important treatment for MS related thinking/memory problems is to treat the MS itself. Regarding medications specifically for memory problems, one study showed a modest benefit in improving memory in MS patients with donepezil (Aricept ®), a medication originally used to treat Alzheimer’s disease.
34. How is depression in MS treated?
There are a number of drugs that can be used for the treatment of depression: Selective Serotonin Reuptake Inhibitors (SSRIs) are often preferred because they have fewer side effects compared to other classes of antidepressants. Talking with a therapist has also been shown to help improve symptoms of depression. Often, patients benefit most from a combination of both medications and therapy.
35. What can be done for episodic manifestations (a series of attacks?)
Episodic electric-like pain such as trigeminal neuralgia can be treated with different types of antiepileptic (anti-seizure) drugs (carbamazepine, gabapentin, topiramate, phenytoin and pregabalin), anti-spasticity agents (baclofen) or with some of the antidepressants proven to be useful in chronic pain (amitriptyline, nortriptyline, duloxetine). If medical treatment fails to control the symptoms, more invasive treatments such as injecting phenol or ethanol to block nerve conduction or surgery to ablate (cut) nerve roots can be considered.
36. What about treating fatigue and MS?
There are non-medication and medication measures to deal with the fatigue.
• Non-medication measures include avoiding aggravating factors such as heat, excessive exercise, and fevers. Also, low intensity physical activity (yoga, walking, exercising in a cool pool) has been show to help reduce fatigue in MS patients.
• Medication therapies include amantadine, modafinil, CNS stimulants, antidepressants, 4-AP and levo-carnitine. They usually work well but few cases fatigue remains difficult to manage.
37. What is nystagmus in MS and what can be done for it?
Nystagmus (rapid involuntary back-and-forth eye movements) is one of the most challenging symptoms to treat. Some studies suggest that memantine may be effective. Medications such as baclofen, clonazepam and gabapentin have shown modest improvements. In some cases, surgical procedures may be considered.
38. What about treating spasticity in MS?
There are a number of drugs used to treat spasticity (limb stiffness caused by MS lesions affecting the brain or spinal cord). These include baclofen, tizanidine, clonazepam and diazepam. In difficult cases, baclofen can be administered directly into the spinal fluid through an implantable pump. For focal hypertonia (stiffness) affecting one arm or one leg, botulinum toxin can be used. Daily stretching exercises may help temporarily decrease spasticity and help prevent muscle contractures.
39. What can be done about sexual issues?
Modifications before sexual intercourse may be helpful, including:
• Minimizing fatigue (change of the timing of the sexual activity to the morning, use of energy-saving techniques, etc.)
• Prevention of bowel and bladder dysfunction during intercourse
• Decreasing the use of medications that may impact sexual performance
40. Are there specific medical therapies for men having sexual issues?
• Oral agents like sildenafil, urethral suppositories like prostaglandin E1 (PGE1), and injections like papaverine, phenoxybenzamine and PGE1 can be used for erectile dysfunction.
• Vacuum suction devices, or pumps, are used to create an erection. Using a hand pump or a battery-operated machine, air is suctioned out of the tube, creating vacuum around the penis. This causes blood to move into the penis and erection to occur; a band is then placed at the base of the penis to maintain the erection and the device is removed.
• Penile implants, both inflatable and non-inflatable are available. The advantages and disadvantages should be discussed with a urologist.
41. Are there medical therapies for women having sexual issues?
• Use of lubricants for vaginal dryness
• Use of sexual aids and devices such as vibrators before or during sexual intercourse
• Use of topical anesthetics, anticonvulsants for vaginal pain and paresthesias
42. What is an MS attack?
An MS attack (also called exacerbation, flare up and relapse) is due to an area of inflammation in the brain and/or spinal cord. The symptoms caused by the attack will depend on which part of the brain or spinal cord the inflammation occurs. Typically, the symptoms from an MS attack reach maximum intensity after a few days and then slowly improve over a few weeks time. Recovery from an MS attack can be complete or incomplete.
43. How are MS attacks treated?
In evaluating an MS attack, it is important to check for an infection (such as a urinary tract infection), which can precipitate an attack or cause old MS symptoms to recur (a pseudo-exacerbation, see Infections section).
Typically MS attacks are treated with high-dose intravenous (IV) steroids, one gram a day for three to five days. Under certain circumstances, such as in patients with poor venous access or when a patient is traveling away from home, steroids can be given orally.
Steroids used for the treatment of the MS attack are not muscle builders or performance enhancers; they decrease inflammation in the brain and spinal cord. The goal of steroid treatment of MS attacks is to speed up the recovery.
44. Is it necessary to administer steroids in the hospital?
No, if a patient is safe at home, then IV steroids can be safely administered at home by a qualified home health nurse or at an outpatient infusion center. However if there is a risk of falling, other safety concerns, or complicating medical condition such as diabetes, then it is preferable to admit the patient into the hospital for this treatment.
45. Is it necessary to take an oral taper of steroids after the IV course?
There is no good data to prove that an oral taper with prednisone is needed after finishing a course of IV steroids. Some neurologists use oral prednisone because in their experience their patients do better with the taper. This option should be evaluated on case-by-case basis.
46. What are the side effects of steroids?
Short-term side effects include
• Mood irritability
• Euphoria (sense of well being)
• Flushing of the face
• Increase in appetite, weight gain
• Metallic taste
• Irritation to the lining of the stomach
• Temporary increase in blood pressures
• Temporarily elevated blood sugars in diabetics
Side effects seen with prolonged steroid use:
• Osteoporosis (thinning of the bone)
• Menstrual irregularities
• Candidal (fungal) infections
47. Do steroids have an effect on long term outcome of the disease?
This subject is still a matter of debate. Recently some studies have shown steroids to have a beneficial effect on long-term outcome while other studies failed to do so.
The main reason for steroid use in MS is the treatment of an attack. However IV steroids can be used as booster therapy to stabilize active disease, which is not being controlled by the current therapy (for example, either Interferons or Copaxone). These boosters are generally given once per month for up to several months to years.
48. What if somebody has an attack but has a contraindication for steroid use?
If steroids cannot be used, other options are available including plasmapheresis and IVIG.
49. What is plasmapheresis (PP)?
Plasmapheresis is a medical procedure done at an outpatient center or hospital and usually takes three to four hours to complete. A small, thin tube (catheter) is placed in a large vein, usually the one in the crook of the arm, and another tube is placed in the opposite hand or foot. Some of the fluid in the blood (known as plasma) is removed and replaced with plasma with neutral proteins. This procedure is thought to remove inflammatory substances in the blood that may be causing or contributing to the MS attack, however, the exact mechanism of PP is unknown.
50. What are the different types of MS?
There are two broad classes of MS:
• Relapsing-remitting multiple sclerosis (RRMS) is by far the most common type of MS (80-85%). This form of MS is characterized by relapses (MS attacks) and remission (recovery, either complete or incomplete). Later in the disease course, RRMS patients may stop having frequent attacks but slowly develop disability independent of relapses. This phase of the disease is called Secondary Progressive MS (SPMS).
• Primary-progressive MS is the less common form of MS (10-15%). In this type of MS, patients do not experience relapses and progress steadily from disease start.
51. What are disease modifying therapies (DMT)?
Disease-modifying therapies are treatments which can change the natural course of the disease. With the help of a particular disease modifying therapy, a patient will have less disability than if he or she is left untreated. Currently there are five FDA-approved DMTs for RRMS.
• Three of them are interferons (IFN)
• One is a peptide, glatiramer acetate (GA)
• One is a type of antibody, natulizumab
|Generic name||Market Name||Frequency||FDA Approved|
|Interferon||IFN beta-1b||Betaseron®||3 times a week||1993|
|Interferon||IFN beta-1a||Avonex®||Once a week||1996|
|Interferon||IFN beta-1a||Rebif®||3 times a week||2002|
|Peptide||glatiramer acetate (GA)||Copaxone®||Daily||1997|
|Monoclonal||natulizumab||Tysabri®||Monthly IV infusion||2006|
Unfortunately at this time there is no FDA approved DMT for primary progressive multiple sclerosis (PPMS). However, based on individual case scenario, the neurologist may consider some treatment options in an attempt to slow the disease progression. There needs to be a clear understanding that there is no large study which has unequivocally established the effectiveness of any therapy for PPMS.
Mitoxantrone (MIT) is an additional agent which was approved by the FDA in 2001 for worsening RRMS or progressive relapsing MS (a type of MS where there is an occasional relapse on the top of a progressive disease). MIT belongs to the chemotherapy class of drugs.
52. I was recently diagnosed with MS; do I need to get treatment now?
It is likely that you may benefit from early treatment. The majority of MS experts and the MS society of Canada and USA encourage early treatment once the diagnosis of RRMS is confirmed.
53. How are the DMT administered?
All of the beta interferons and glatiramer acetate are prepared for self-injection. Natulizumab is given as a monthly IV infusion at an outpatient infusion center. Currently no pill forms of any MS drug are available.
54. How do interferons work?
Most data suggest that IFN beta is most effective in healing the blood brain barrier (the passage through which blood is carried into the brain). This healing prevents the inflammatory cells of the immune system from entering the brain. These cells are called lymphocytes and could be potentially harmful to brain proteins (in this case, myelin proteins and axons).
55. How does glatiramer acetate work?
Recent data suggest that glatiramer acetate works by changing the harmful inflammatory cells into the non-inflammatory healing cells of the immune system.These healing cells have been shown in the animal model to penetratethe brain and minimize inflammation.
56. How does natalizumab work?
Natalizumab is believed to work by inhibiting (blocking) inflammatory cells of the immune system from entering the brain.
57. Is one of the disease modifying therapies better than the other?
It is difficult to say that one disease modifying therapies works best for all MS patients. Several studies have shown that high-dose, high-frequency beta interferon (Betaseron®, Rebif®) is superior to low-dose, low frequency beta interferon (Avonex®) in reducing relapses. Glatiramer acetate, which appears as effective at reducing relapses as Betaseron ® and Rebif ®, was shown to be effective in long-term studies (14 years) and has fewer side effects. All these data should be considered before choosing therapy and every case should be carefully evaluated.
Natalizumab may work better than the other disease modifying therapies, although head-to-head comparisons with interferons and glatiramer acetate have not yet been done. Furthermore, natalizumab is FDA approved for use as a second- line agent, meaning it is only used if a patient does not respond to or cannot tolerate IFN or GA.
58. Since the DMT work differently, is it possible to combine them?
Preliminary studies suggest that the combination of beta-interferon and glatiramer acetate is safe. However, larger studies, which are currently ongoing, are needed to confirm that the combination therapy is clinically effective.
59. What are the side effects of interferons?
• Injection site reaction (redness, itching, pain)
• Injection site necrosis, though rare, can be seen with Betaseron® and Rebif®
• Flu-like symptoms (fever, chills, muscle pain, malaise)
• Abnormal white blood count and liver function tests
• Menstrual disorders (see fertility issues)
• Spasticity (may worsen preexisting stiffness)
60. What are the side effects of glatiramer acetate?
• Injection site reaction (redness, itching, pain)
• Chest discomfort, flushing, palpitations, shortness of breath which start within few minutes of the injection and resolve spontaneously within a half-hour; it has never been reported to have any serious consequences.
61. What are the side effects of natalizumab?
• In the original clinical trials for Tysabri, 3 of 3000 patients taking Tysabri combined with another drug developed a very serious brain infection called Progressive Multifocal Leukoencephalopathy (PML). Two of those three patients with PML died. The exact risk of developing PML using Tysabri alone (not in combination with other drugs) is unknown at this time; however, the risk is assumed to be around one in 1,000. Patients on Tysabri may be at risk for other serious infections, such as pneumonia, as well.
• Urinary tract or upper respiratory tract infections
• Headaches, fatigue, depression, stomach aches, joint pain, diarrhea
• Rare allergic reactions that can be mild or serious. Mild allergic reactions do not require treatment. Severe allergic reactions require immediate and intensive medical treatment.
62. How can I know if the DMT is working for me?
Evaluating if a DMT is working is not a simple task. A patient often needs to be on a medication for at least a year or two before a determination can be made. Generally speaking, if the patient is experiencing fewer or no attacks with no signs of disease progression, then in all likelihood, the patient is responding to therapy.
63. How can I know that the DMT is not working? (treatment failure)
If a patient continues to have attacks at the same rate as before s/he started therapy AND/OR shows signs of disease progression, then it is possible that s/he is not responding to treatment. A patient often needs to be on a medication for at least a year or two before a determination can be made.
64. Should I have another MRI of the brain or spinal cord if my disease is not controlled?
If a patient continues to worsen, then repeating MRIs of the brain and spinal cord may be helpful in planning other treatment strategies.
65. Are these drugs needed indefinitely?
At this point the DMTs are intended to be used indefinitely unless there is a treatment failure or a better treatment becomes available.
66. Are there any interactions between the DMT and other drugs commonly used in MS?
The interactions between DMTs and other drugs used in MS have not been fully evaluated. However, results from controlled trials of the DMTs did not suggest any significant interaction with commonly used therapies in MS.
67. What if my insurance does not cover the DMT or what if I have no insurance?
DMT are expensive and may cost thousands of dollars per year. However all these drugs are FDA approved for RRMS and most insurance companies will cover them. The amount covered, however, may vary from one insurance plan to another. Each insurance plan has a different deductible and co-pay that the patient needs to know about.
If the patient has no insurance or inadequate insurance coverage, the drug companies that make these DMTs have patient assistance programs which can provide these patients with free or reduced-cost therapy.
68. Are there any other DMTs available for use in MS?
IVIG has been shown in to help decrease relapses in RRMS. It is considered a second line therapy, and may be considered in patients that do not respond to, or cannot tolerate interferons or GA.
In addition to mitoxantrone (MIT), cyclophophamide (CTX) has been also reported to help slow down rapidly worsening MS, but its use is “off label” since it is not FDA approved for this purpose.
69. How do MIT and CTX work?
Both MIT and CTX are immunosuppressants that have been used to treat different types of cancer. In MS, these drugs work by suppressing a presumably over-active immune system and therefore minimize inflammatory damage in the CNS.
70. How is MIT administered?
MIT is most often administered intravenously every three months until a total cumulative dose of 140 mg/m2 has been given. Less MIT should not be used once the patient has reached this maximal dose because of potential heart toxicity.
71. How is CTX administered?
CTX is administered intravenously every month for six to12 months and even longer if deemed necessary.
72. What are the side effects of MIT?
The most common side effects are:
• Decreased blood count (CBC) with a possible risk of infections
• Abnormal liver function tests (LFTs)
• Nausea, vomiting
• Temporary hair thinning
• Cardiac toxicity
73. What are the side effects of CTX?
The most common side effects are:
• Decreased blood counts (CBC) with a possible risk of infections
• Abnormal liver function tests (LFTs)
• Nausea, vomiting
• Temporary hair thinning
• Bladder irritation if adequate fluids are not given with the CTX treatment
74. Is it possible to administer MIT and CTX at home?
No. MIT and CTX should be administered in an outpatient infusion center specializing in the administration of chemotherapy.
Fertility issues in MS
75. Does MS affect fertility?
No. MS has no significant effect on fertility.
76. Can a woman with MS have children?
Yes, but pregnancies should be carefully planned. A woman should be taken off her immunomodulatory therapy for one or two months before attempting to become pregnant, for the whole period of pregnancy and after delivery if she decides to breastfeed. Communication between the neurologist and the obstetrician is beneficial.
77. What will happen to MS during pregnancy?
In general, women with autoimmune diseases such as MS tend to do better (have a less active disease course) during pregnancy. Pregnancy appears to have a natural immunosuppressive effect. However there appears to be a higher risk of an MS relapse (attack) for a few months after delivery.
78. Does pregnancy increase the risk of MS?
Studies have shown that pregnancy does not seem to increase the risk of developing MS.
79. Is it safe to breastfeed if I have MS?
It is safe for a patient with MS to breastfeed; in fact, breastfeeding may help decrease relapse rates (attacks) following delivery. However, DMTs may be passed though breast milk and women should not continue to breastfeed once they restart these medications. The timing of when to stop breastfeeding and restart DMTs should be discussed with the neurologist.
80. Are oral contraceptives safe if I have MS?
Oral contraceptive pills are not contraindicated in women with MS if there are no other medical problems which prevent its use. In fact, contraceptive methods are recommended for women using DMT.
81. Can I have a vaginal delivery if I have MS?
MS patients are expected to have a normal labor and vaginal delivery; a Cesarean section may be recommended by the obstetrician for other reasons.
82. DMTs and fertility
Mild to moderate menstrual irregularities (delayed menses, intermenstrual bleeding and spotting, heavy menses) have been noted during the clinical trials with IFN beta-1b but not glatiramer acetate.
83. Are the DMTs harmful in pregnancy?
The interferons and natalizumab were found to increase abortions in animal studies. This effect was not seen with Copaxone® in animal studies.
There are no large controlled studies on the use of DMTs during pregnancy in humans so these medications should be stopped 1 to 2 months before pregnancy. The interferons and Natulizumab are considered by the FDA as pregnancy category C* and GA as category B**. Despite the FDA warning that these drugs should not be used during pregnancy, there have been healthy children born to women who have been on DMTs.
* Category C: no adequate human or animal studies have been conducted OR there are adverse fetal effects in animal studies, but no available human data.
**Category B: controlled human studies indicated no fetal risk, but there are no human studies OR there are adverse effects in animal studies, but not in well-controlled human studies.
84. Breastfeeding and DMT
DMTs may be secreted into breast milk. The FDA clearly states that these drugs should not be used in breastfeeding women. Decisions about whether to breastfeed and when to restart DMTs should be discussed with the neurologist.
85. How are MS attacks treated during pregnancy?
The risks and benefits of using steroids during pregnancy should be carefully evaluated. It is advisable to avoid them during the first trimester of pregnancy when the major fetal systems are being formed. Other therapies like plasmapheresis (PP) have been shown to be safe during pregnancy and can be used alternatively.
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86. What is the ADA and how does it affect the patient with MS?
The American Disability Act (ADA) was enacted in 1990. Under this act, employers with 15 or more employees are required to provide reasonable accommodations for the qualified person with disability. These reasonable accommodations are determined on a case-by-case basis and according to the physical limitations of the employee. To be eligible for these accommodations, the employee should disclose that s/he has a disability but not necessarily his/her diagnosis.
87. What are considered to be reasonable job accommodations?
Job accommodations are related to restructuring the physical environment (for example: enough space for a scooter, ramps) and scheduling (for example extended lunch break for somebody who has fatigue).
88. What if the employer decides to terminate the employment of the person diagnosed with MS?
Under Title I of the ADA, hiring, promoting, layoff and termination must be made independently of the disability status.
89. What if the physical disability interferes with the job?
Each of the 52 states has a Division of Vocational Rehabilitation office that can address job retraining and alternative vocations. Information regarding vocational rehabilitation in each state can be found on the World Wide Web by doing a key word search for “division of vocational rehabilitation.”
90. Is it possible to fire an employee because of frequent time off related to MS relapses?
Yes it is possible, however the Family and Medical leave Act (FMLA, 1993) allows an employee with a serious medical condition to have unpaid medical leaves (up to 12 weeks per year) and to return to the same position, if he/she is not holding a key job (an example of a key job is being the director of a company). Unpaid medical leaves allow an employee to retain the health insurance benefits paid by for by his/her employer.
91. Since MS is a chronic disease with potential physical limitations, is there any benefit from not working?
MS is not a reason to stop working. As long as the employee is able to fulfill the tasks required of him/her, there is no reason to stop working. In fact, because of the ADA and FMLA acts, many patients are able to maintain a job for a longer time. Working may be needed for financial reasons, to maintain health insurance, and for one’s own satisfaction. The ultimate decision to continue working is made by the patient him/herself.
92. When an employee applies for a new job can he/she be denied coverage from the employer’s health insurance because of MS?
Yes, s/he can be denied if the employer has already predetermined health exclusions criteria for its employees. However this should be applied equally to all employees.
An employer cannot refuse to hire somebody because it may result in higher insurance premiums. Also, the Health Insurance Portability and Accountability Act (HIPAA, 1996) enables a person with a disability to be exempt from preexisting condition exclusions under the new employer. The employee, however, must continue with their previous health insurance benefits as long as possible before being allowed to transfer coverage to the new employer’s plan.
93. What are the qualifications for social security disability insurance (SSDI) and Supplemental Security Income (SSI)?
Both SSDI and SSI are run by the Social Security Administration and both have the same medical requirements for an employee to be eligible. You can learn more on the World Wide Web at: http://www.ssa.gov/dibplan/index.htm, or by calling 1-800-772-1213.
A comparison of SSDI and SSI is shown in the following table.
|Worked and paid FICA||Financial need independently from previous work history or FICA|
|Paid taxes in recent years||Same as above|
|Too disabled to work||Too disabled to work|
|Unemployed or earning less han SGA*||Unemployed or earning less than SGA*|
|Affected by other workers’ compensation payment||Affected by other workers’ compensation payment|
|Not affected by non-work income or resources||Not affected by non-work income or resources|
|Waiting period of 5 months from disability determination to the start of benefits||No similar waiting period as in SSDI
|Waiting period of 24 months for Medicare benefit||Immediate benefit from Medicaid
|Work activity does not terminate benefits for at least 4 years||Work activity does not terminate benefits indefinitely|
|Parttime work is possible without losing the money**||Parttime work is possible without losing the money**|
* SGA : Substantial gainful Activity, $500 and $810 for beneficiaries who are blind.
** As long as the amount of money paid is less than the SGA.
94. What is the Swank diet?
Several decades ago, Dr. Roy Swank developed a diet for MS patients which is rich in polyunsaturated fatty acids (the kinds of fatty acids found in fish oil and vegetables). Presumably, these fatty acids suppress the production of substances responsible for activating immune cells that may cause damage to myelin and axons in MS. Although the Swank diet may be helpful in immune mediated diseases such as MS, these claims have not yet been proven.
95. What is a vegan diet?
A vegan diet is a strict vegetarian diet free of meat, eggs and milk. There is some evidence that it may be beneficial in immune mediated diseases, but it has not been studied in MS. Following a strict vegan diet for several years can lead to low vitamin B12 levels. Before a patient starts a vegan diet, it is recommended that they discuss the decision with his/her doctor.
96. What about the affects of certain vitamins?
Vitamin D and MS
Preliminary studies have shown a possible beneficial effect of vitamin D in some autoimmune diseases including MS. However, excessive use of vitamin D can be harmful. Studies are under way to better define the role of Vitamin D in MS. Until results from these vitamin D studies are completed, it is not recommend that a patient take extra vitamin D (more than is found in a multivitamin).
Vitamin C, E and beta-carotene, and MS
Careful use of vitamins C, E and beta-carotene according to dietary recommendations may be beneficial in immune mediated disorders. There are no controlled data that prove the effectiveness of vitamins C, E and beta-carotene in MS. Excessive use of these vitamins may be harmful. At this time, it is not recommended that a patient take extra vitamin C, E, or beta-carotene (more than is found in a multivitamin).
Vitamin B12 and MS
The use of vitamin B12 in MS has been subject of long standing debate. Currently there is no evidence for routine administration of vitamin B12 to MS patients. It should be used only if there is a documentation of vitamin B12 deficiency or is otherwise medically indicated. Otherwise, it is not recommended that patients take more vitamin B12 than what is found in a multivitamin.
97. Does mercury affect people with MS?
Mercury present in dental fillings was thought to be toxic to people with MS. However, no studies have shown such toxicity and there is no reason to remove mercury from dental filling in patients with MS.
98. What is Feldenkrais body work?
Feldenkrais – a type of physical therapy where patients are taught body awareness – has been shown to have some positive role on stress perception and anxiety in MS.
99. Can hyperbaric oxygen therapy (HBOT) help people with MS?
HBOT has been studied in MS, however, the results were conflicting. It has not been shown to have a beneficial effect on the long-term outcome in MS. With the availability of DMTs and other symptomatic treatments, HBOT is not commonly used in MS.
100. Is Hydrotherapy beneficial to people with MS?
Studies have shown that hydrotherapy, or pool therapy, may decrease spasticity (stiffness) in MS. Patients who are interested in hydrotherapy can enquire with their local chapter of the National MS Society (NMSS) if there is an “MS friendly pool” in their area. Local NMSS chapters can be found by calling 1 (800)FIGHT-MS (1(800)344-4867).
101. Are there benefits to hippotherapy (horseback riding)?
Hippotherapy has been suggested to be of possible benefit in MS, particularly in reducing spasticity and balance problems.
102. What are some commonly used herbal therapies?
Ginkgo biloba, St. John’s wort, ginseng, kava, echinacea, saw palmetto and primrose oil are some of the commonly used herbal therapies; some of them are marketed in Europe as medications, whereas in the USA they are available as dietary supplements. While herbal therapies may have some benefit in MS, caution should be taken when using these supplements.
Ginkgo’s fruits and seeds have been used for millennia in traditional Chinese medicine. In clinical practice it is used for cognitive impairment, dementia and tinnitus (ear buzz). However, there is no evidence demonstrating that ginkgo enhances normal cognitive function. Studies have failed to demonstrate an improvement in cognition in MS patients taking Ginkgo.
St. John’s wort (Hypericum Perforatum)
This agent is used for the treatment of mild to moderate depression. Its effect on depression has been proven in a few comparative studies. It is well tolerated and safe when taken by itself though it has a high potential for interactions with other drugs. Before starting St. John’s Wort, it is recommended that patients discuss this herbal therapy with their doctor.
Ginseng is one of the most commonly used herbal therapies as an aphrodisiac and energy enhancer. Despite this, scientific data about its presumed benefit were not impressive. There is no documented effect of ginseng in MS patients.
This herbal agent is used for treatment of respiratory infections. Although echinacea is thought to stimulate the immune system and possibly have some anti-inflammatory activities, there is no data on its potential effects in MS patients.
This plant has been used for the treatment of bladder and pelvic problems. However, Saw palmetto does not seem to be helpful in MS.
Kava is used as an anti-anxiety agent and seizure suppressant. It is a commonly used recreational drug in the south pacific and has been shown to be of some benefit in mild anxiety. However, its major limitation is liver toxicity, especially in people who use other substances with potential damage to the liver.
Evening primrose oil (EPO)
EPO is used in some autoimmune diseases such as rheumatoid arthritis. Presumably it has some anti-inflammatory activity. A controlled study of EPO in MS has not been done yet.
View more information about integrative medicine services at the OSU Center for Integrative Medicine or call (614) 293-9777.
Genetics and MS
103. My twin sibling has MS; what is my risk of having the disease?
In general if you are an identical twin, your risk of acquiring MS is about 25percent to 30percent. If you are a fraternal twin, your risk is about 5percent
104. I have a sibling with MS; what is my risk of having the disease?
Your risk of having MS is approximately 5percent.
105. My mother (or father) has MS; what is my risk of having the disease?
Your risk of having MS is about 2.5percent.
106. Both of my parents have MS; what is my risk of having MS?
Your risk of having MS is about 5percent.
107. Who is at risk of developing MS?
It is very difficult to predict who is at risk to develop MS. In theory, anybody can develop MS. Populations with a genetic makeup composed of northern and central Europeans are more likely to develop MS than others. In contrast, native Africans are least likely to develop MS.
108. Is there any difference MS in African-Americans?
It was originally thought that MS happens in Caucasian populations in colder areas or northern latitudes. However, we now know that the disease is not that uncommon in African-Americans. African-Americans may have a more aggressive disease course compared to Caucasian MS patients. Also, African American patients tend to have more frequent episodes of optic neuritis and transverse myelitis. The reasons for the differences are currently being studied.
109. Is MS associated with other autoimmune diseases?
In general, having one autoimmune disease such as MS raises the chance of having other autoimmune diseases such as diabetes of youth, thyroid disorders, skin diseases (eczema and psoriasis), connective tissue diseases (lupus and others) and inflammation of blood vessels known as vasculitis (giant cell arteritis and others).
The risk of autoimmune diseases clustering in one person or one family is not well understood, but is occasionally seen.
Infections and MS
110. What is the role of infections in MS?
Infections may trigger an MS attack. Particularly common are flu and urinary tract infections. These infections may also cause existing MS symptoms to worsen temporarily (see pseudo-exacerbation).
111. What is a pseudo-exacerbation?
Infections (such as the flu or a urinary tract infection) or a fever can sometimes cause existing MS symptoms to worsen temporarily which can mimic an MS attack; this is known as pseudo-exacerbation. Appropriately treating the infection (for example taking antibiotics for a urinary tract infection) often leads to improvement of worsened MS symptoms without using steroids.
112. Do infections cause MS?
Over the years, several infectious agents have been implicated as a possible cause or trigger of MS. Thirty years ago, viral infections such as mumps and measles were thought to be a contributing factor in MS. More recently, infectious agents such as herpes virus type 6, Epstein-Barr virus (mononucleosis) and Chlamydia (a bacterial infection) have been implicated as potential causes of MS. At this time, there is no conclusion that any single infection is definitely related to MS.
113. Can you get MS from vaccinations?
Vaccines have been associated with rare, seemingly immune-mediated neurological complications. However, studies have not supported a relation between flu, tetanus and hepatitis B vaccinations and MS exacerbations. In general, there is no reason why an MS patient should not receive a vaccine if it is clinically indicated. Caution, however, should be taken when considering taking an attenuated live vaccine. Concerns regarding individual vaccines should be discussed with the patient’s primary care doctor.
Exercise and rehabilitation in MS
114. Can MS patients exercise?
Yes! Exercise is not contraindicated in MS patients. Each patient has to learn his/her own limitations. Consulting a neurologist is highly recommended before starting any exercise program. Swimming and aquatic programs are very beneficial. Physical rehabilitation can be helpful in ataxic and spastic patients.
115. Does rehabilitation help with spasticity?
Stretching exercises and the use of splints can help treat spasticity from MS. These exercises and manipulations can be used in addition to anti-spasticity medications.
116. What's the role of rehabilitation for swallowing difficulty (dysphagia)?
Patients with swallowing difficulties should undergo a swallowing evaluation by a speech pathologist. Special tests using X-rays may help identifying the swallowing problem and guide suggestions for appropriate treatment.
117. Is rehabilitation helpful for pain?
Rehabilitative approaches may be helpful in MS patients with pain. Physical and occupational therapy can be useful.
118. Is there bowel and Bladder rehabilitation?
There are specific exercises (for example, Kegel exercises) that may be helpful in improving bowel and bladder control. Specialized rehabilitation centers may provide the best types of therapy for these problems.
Anesthesia, surgery, dental care and MS
119. Can MS patients have anesthesia safely?
MS is not a contraindication to having anesthesia. MS patients can receive epidural, local and general anesthesia as recommended by an anesthesiologist. MS also is not a contraindication for any surgery.
120. Are there any differences with dental care for patients with MS?
MS patients should undergo dental care as planned. Only those patients who are on immunosuppressants (chemotherapy) or actively taking steroids should consult with their neurologist to discuss the risk of infection prior to a dental procedure.