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What is a Multiple Sclerosis Specialist?
An MS specialist is a neurologist who specializes in the treatment and management of multiple sclerosis (MS). While all doctors get training in MS, MS specialists dedicate their careers to the treatment of this specific condition. Because of this, MS specialists usually have more direct access to many treatment options and stay on top of cutting-edge research that may help people with MS.
What is Multiple Sclerosis?
Multiple sclerosis (MS) is a long-lasting (chronic) disease of the central nervous system. It is thought to be an autoimmune disorder, a condition in which the body attacks itself by mistake. MS is an unpredictable disease that affects people differently. Some people with MS may have only mild symptoms. Others may lose their ability to see, write, speak, or walk when communication between the brain and other parts of the body becomes disrupted.
Myelin is a protein and fatty substance that surrounds and protects nerve fibers. In MS, the immune system attacks the myelin, which becomes destroyed in many areas. This loss of myelin forms scar tissue called sclerosis. These areas are also called plaques or lesions. When the nerves are damaged in this way, they can’t conduct electrical impulses normally to and from the brain.
When MS causes repeated attacks, it's called relapsing-remitting MS. When the symptoms progress over time without clear attacks, it's called primary progressive MS.
How Common Is Multiple Sclerosis?
Currently, 2.9 million people have multiple sclerosis worldwide. A landmark study funded by the National Multiple Sclerosis Society found that nearly 1 million people in the U.S. have MS, more than twice the previous estimate.
Recent research tells us that anyone in the U.S. general population can develop MS — regardless of age, race, ethnicity, or sex assigned at birth. Whether MS is becoming more common or not, we don’t know. Without complete information on the number of people diagnosed with MS, it’s difficult to tell if more people are getting MS or if the total number is just a reflection of overall population growth and better diagnostic capabilities.
Who is at Risk for Multiple Sclerosis?
Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS. More women are diagnosed with MS than men, and the area where someone lives, as well as race and ethnic background, also helps to determine his or her risk of developing the disease.
One study, however, challenges the existing theories on the prevalence of MS according to race and ethnic background. Appearing in the May 7, 2013 issue of Neurology, the results of this study contradict theories that African-Americans are less prone to MS as compared to Caucasians. The study looked at data from the Kaiser Permanente Southern California health plan (with more than 3.5 million members) from January 1, 2008 to December 31, 2010.
During the timeframe mentioned, 496 individuals were diagnosed with MS. Approximately 70 percent of those diagnosed were women, most of whom were diagnosed with relapsing-remitting MS (RRMS). According to the published results, compared to Caucasians, African Americans had a 47-percent increased risk of MS, while Hispanics had a 50-percent reduced risk and Asians had an 80-percent reduced risk. The risk of MS was highest for African-American women, whereas the risk of MS for African-American men was lower and about the same as the risk for Caucasian men.
Is There a Cure for Multiple Sclerosis?
There is no cure for MS, but there are treatments that can reduce the number and severity of relapses and delay the long-term disability progression of the disease.
Corticosteroids, such as intravenous (infused into a vein) methylprednisolone, are prescribed over three to five days. Intravenous steroids quickly and potently suppress the immune system and reduce inflammation. They may be followed by a tapered dose of oral corticosteroids. Clinical trials have shown that these drugs hasten recovery from MS attacks, but do not alter the long-term outcome of the disease.
Plasma exchange (plasmapheresis) can treat severe flare-ups in people with relapsing forms of MS who do not have a good response to methylprednisolone. Plasma exchange involves taking blood out of the body and removing components in the blood's plasma that are thought to be harmful. The rest of the blood, plus replacement plasma, is then transfused back into the body. This treatment is not effective for secondary progressive or chronic progressive MS.
Is MS a Genetic or Hereditary Condition?
MS is not directly inherited from parent to child. There's no single gene that causes it. Over 200 genes might affect your chances of getting MS. But genes are only part of the story. MS can happen more than once in a family, but it's much more likely this will not happen. There's only about a 1.5% chance of a child developing MS when their mother or father has it (that means around one in 67 get it). There's only around a 2.7% chance that you'll get MS if your brother or sister has it (around one in 37 get it). In 2014 a very large study found that MS may be even less likely to be passed on than these figures suggest.
Can Multiple Sclerosis Cause Paralysis?
Multiple sclerosis is a chronic inflammatory autoimmune disease, where the immune system attacks myelin, the fatty protective covering surrounding nerve fibers in the central nervous system. When myelin is damaged, the messages that are sent to and from the brain to your muscles become interrupted. This can result in paralysis.
Paralysis is somewhat rare these days: Less than a third of people with multiple sclerosis end up with some form of paralysis, and most of those still retain some mobility. (There are no specific numbers on how many people develop full paralysis but doctors say it is relatively rare.) If paralysis does occur, it’s typically after someone has had MS for many years. Paralysis results from complete damage to the brain or spinal cord in areas responsible for motor control.
Even if you do develop some form of paralysis, it’s not necessarily permanent. In relapse remitting MS (RRMS), the most common form of MS, a relapse event can cause paralysis that occurs within hours to days, lasts days to months, and is followed by recovery, not all patients experience full recovery.
Paralysis may also not be what you are picturing. “It’s uncommon to become completely paralyzed from MS. Widespread muscle weakness—a symptom 70% of people with MS report experiencing, according to a study published in Disability Rehabilitation—is more common.
Is Multiple Sclerosis Fatal?
While MS isn’t fatal on its own, accompanying complications can shorten your life. That said, treatment can significantly decrease the chance of a shortened lifespan.
Complications associated with MS, like infections, cardiovascular disease, and accidents, can cause the lifespan of someone with MS to be shorter than people who aren’t living with MS. But treating these complications can greatly reduce the risk of a shortened lifespan.
According to the National Multiple Sclerosis Society (NMSS), the lifespan of people with MS has increased over time. However, the associated complications cause the average lifespan with MS to be about 7 years shorter than people who don’t live with MS.
Those with MS tend to die from many of the same conditions as people who don’t have the condition, like cancer and heart disease. Apart from cases of severe MS, which are rare, the prognosis for longevity is generally good.
What is the Life Expectancy of a Person with Multiple Sclerosis?
MS can be a challenging condition to live with, but new treatments over the past 20 years have considerably improved the quality of life of people with the condition. MS itself is rarely fatal, but complications may arise from severe MS, such as chest or bladder infections, or swallowing difficulties. The average life expectancy for people with MS is around 5 to 10 years lower than average, and this gap appears to be getting smaller all the time.
Is Multiple Sclerosis an Autoimmune Disease?
Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord (central nervous system). MS affects women more often than men. The disorder is most commonly diagnosed between ages 30 to 40, but it can be seen at any age.
Types of Multiple Sclerosis
There are four types of multiple sclerosis. You can think of the types as a way for your provider to describe your symptoms, instead of being four different conditions:
1. Clinically isolated syndrome (CIS): When you have the first episode of symptoms suggestive of MS, but don’t meet the criteria for having MS, healthcare providers often categorize it as CIS. Inflammation and myelin damage cause your symptoms. CIS may develop into multiple sclerosis.
2. Relapsing-remitting multiple sclerosis (RRMS): This is the most common way that multiple sclerosis begins — an estimated 85% of people diagnosed with MS have this type. MS causes flare-ups (relapses or attacks) of new or old symptoms. Periods of remission follow (when symptoms stabilize or go away).
3. Secondary progressive multiple sclerosis (SPMS): In many cases, RRMS eventually progresses to SPMS. In the secondary progressive stage of multiple sclerosis, nerve damage accumulates and symptoms gradually worsen. You may still experience some relapses or flares, but periods of remission (when symptoms stabilize or go away) are less likely to happen.
4. Primary progressive multiple sclerosis (PPMS): In some cases, MS symptoms may start slowly and gradually worsen over time from the very beginning, without any periods of clear relapses or remission.
Three Rare MS Variants include:
1. Tumefactive multiple sclerosis: A characterization of this variant of MS is the formation of large areas of demyelination in your brain, which may appear similar to tumors. Often, a sample of brain tissue is needed to differentiate this from other issues, like brain cancers.
2. Balo’s concentric sclerosis: A characteristic of this variant of MS is lesions with the appearance of concentric rings (in the shape of a target) of myelin damage appearing on an MRI, which gives this condition its name.
3. Marburg variant multiple sclerosis: This is a very rare and aggressive form of MS characterized by rapid progression, which may result in death when left untreated.
Symptoms of Multiple Sclerosis
The symptoms of MS are often unpredictable. They may be mild or severe, short-term or long-lasting. Depending on the area of the nervous system affected, they may appear in different combinations. The following are the most common symptoms of MS. But each person may have different symptoms.
First Symptoms of MS
- Blurred or double vision
- Red-green color distortion
- Pain and loss of vision because of swelling of the optic nerve (optic neuritis)
- Trouble walking and difficulty with balance
- An abnormal feeling, such as numbness, prickling, or pins and needles (paresthesia)
Other Symptoms of Multiple Sclerosis
- Muscle weakness in the arms and legs
- Trouble with coordination. You may have problems walking or standing. You may also be partly or completely paralyzed.
- Spasticity. This is the involuntary increased tone of muscles leading to stiffness and spasms.
- Fatigue. This may be brought on by physical activity. But it may ease with rest. You may have constant tiredness that doesn't go away.
- Loss of feeling
- Speech problems
- Tremor
- Dizziness
- Hearing loss
- Bowel and bladder problems
- Depression
- Changes in sexual function
About half of all people with MS have thinking (cognitive) problems linked to the disease. The effects of these problems may be mild. Your healthcare provider may only find them after much testing. The problems may be with:
- Focusing (concentration)
- Attention
- Memory
- Poor judgment
Causes of Multiple Sclerosis
It's not clear what causes the immune system to attack the myelin sheath. It seems likely that it's partly caused by genes you inherit from your parents and partly by outside factors that may trigger the condition. Some of the factors that have been suggested as possible causes of MS include:
1. your genes – MS isn't directly inherited, but people who are related to someone with the condition are more likely to develop it; the chance of a sibling or child of someone with MS also developing it is estimated to be around 2 to 3 in 100.
2. lack of sunlight and vitamin D – MS is more common in countries far from the equator, which could mean that a lack of sunlight and low vitamin D levels may play a role in the condition, although it's not clear whether vitamin D supplements can help prevent MS.
3. smoking – people who smoke are about twice as likely to develop MS compared with those who don't smoke.
4. teenage obesity – people who were obese during their teenage years have an increased risk of developing MS.
5. viral infections – it's been suggested that infections, particularly those caused by the Epstein-Barr virus (responsible for glandular fever), might trigger the immune system, leading to MS in some people.
6. being female – women are 2 to 3 times more likely to develop MS than men; the reason for this is unclear.
Risk Factors of Multiple Sclerosis
These factors may increase your risk of developing multiple sclerosis:
1. Age. MS can occur at any age, but onset usually occurs around 20 and 40 years of age. However, younger and older people can be affected.
2. Sex. Women are more than 2 to 3 times as likely as men are to have relapsing-remitting MS.
3. Family history. If one of your parents or siblings has had MS, you are at higher risk of developing the disease.
4. Certain infections. A variety of viruses have been linked to MS, including Epstein-Barr, the virus that causes infectious mononucleosis.
5.. Race. White people, particularly those of Northern European descent, are at highest risk of developing MS. People of Asian, African, or Native American descent have the lowest risk. A recent study suggests that the number of Black and Hispanic young adults with multiple sclerosis may be greater than previously thought.
6. Climate. MS is far more common in countries with temperate climates, including Canada, the northern United States, New Zealand, southeastern Australia, and Europe. Your birth month may also affect the chances of developing multiple sclerosis since exposure to the sun when a mother is pregnant seems to decrease the later development of multiple sclerosis in these children.
7. Vitamin D. Having low levels of vitamin D and low exposure to sunlight is associated with a greater risk of MS.
8. Your genes. A gene on chromosome 6p21 is associated with multiple sclerosis.
9. Obesity. An association between obesity and multiple sclerosis has been found in females. This is especially true for female childhood and adolescent obesity.
10. Certain autoimmune diseases. You have a slightly higher risk of developing MS if you have other autoimmune disorders such as thyroid disease, pernicious anemia, psoriasis, type 1 diabetes, or inflammatory bowel disease.
11. Smoking. Smokers who experience an initial symptom that may signal MS are more likely than nonsmokers to develop a second event that confirms relapsing-remitting MS.
Complications of MS
People with multiple sclerosis may also develop:
1. Muscle stiffness or spasms.
2. Severe weakness or paralysis, typically in the legs.
3. Problems with bladder, bowel, or sexual function.
4. Cognitive problems, like forgetfulness or word-finding difficulties.
5. Mood problems, such as depression, anxiety, or mood swings.
6. Seizures, though very rare.
Benefits of Seeing an MS Specialist
Some benefits of going to an MS specialist include the following:
1. They can more accurately and reliably diagnose MS because of their experience with the disease.
2. They work to remain updated on new treatment developments and emerging research. This means their advice may be more updated, and often informed by emerging science.
3. They spend more time with people who have MS. This allows them to draw on anecdotal evidence from others.
4. They may know more MS experts, such as therapists and physical therapists, giving them a broader referral network and more options if a person needs additional care.
5. They can offer a wide range of treatment options. A PCP may routinely prescribe just one or two MS medications, while a specialist has a more comprehensive view of medication and other care options.
6. They usually work with other MS specialists who share knowledge and experience.
7. They may have access to clinical trials and other emerging treatments that can help a person live better with MS.
8. If medication fails or causes unpleasant side effects, an MS specialist will likely have many more treatment options to recommend.
9. An MS specialist typically has more knowledge about MS and pregnancy, fertility, mental health, and other common concerns, meaning they can offer more helpful guidance.
How Multiple Sclerosis is Diagnosed
No specific test is used to diagnose MS. Diagnosis is based on symptoms, signs, imaging, and lab tests. A healthcare provider can make a diagnosis by following a careful process to rule out other causes and diseases. Two things must be true to make a diagnosis of relapsing-remitting MS:
1. You must have had 2 attacks at least 1 month apart. An attack is when any MS symptoms show up suddenly. Or when any MS symptoms get worse for at least 24 hours.
2. You must have more than 1 area of damage to the central nervous system myelin. Myelin is the sheath that surrounds and protects nerve fibers. This damage must have occurred at more than 1 point in time and not have been caused by any other disease.
Your healthcare provider will ask about your health history and do a neurological exam. This includes:
- Mental functions
- Emotional functions
- Language functions
- Movement and coordination
- Vision
- Balance
- Functions of the 5 senses
You may also need:
1. MRI. This diagnostic test uses a combination of large magnets and a computer to make detailed pictures of organs and structures within the body without the use of X-rays. It can find plaques or scarring caused by MS. Generally, a single attack along with certain patterns of changes in brain tissue seen on an MRI scan of the brain done with contrast can mean that you have MS.
2. Evoked potentials. These tests record the brain's electrical response to visual, auditory, and sensory stimuli. These tests show if you have a slowing of messages in the different parts of the brain.
3. Cerebrospinal fluid analysis. This is also called a spinal tap or lumbar puncture. It looks at the fluid taken from the spinal column to make an evaluation or diagnosis. This test checks for cellular and chemical abnormalities seen with MS.
4. Blood tests. These are done to rule out other causes of various neurological symptoms.
5. Eye exam and visual field measurements.
How to Get Rid of Multiple Sclerosis
Multiple sclerosis treatment minimizes further damage, manages symptoms, and prevents complications. Your treatment plan may include:
- Medications.
- Physical, occupational, or speech therapy.
- Mental health counseling.
Other types of symptom management vary based on how the condition affects you. It may include:
- Wearing glasses or taking medications for vision symptoms.
- Deep brain stimulation for muscle spasms (tremors).
- Using assistive mobility devices like a cane, walker or wheelchair.
- Antiseizure medications or antispasmodic medications (gabapentin or nortriptyline) for pain.
- Medications like donepezil for cognitive symptoms.
- Alternative therapies like acupuncture and yoga.
Your healthcare provider may recommend plasma exchange (plasmapheresis) if your body doesn’t respond well to certain medications amid an MS attack. This is more effective in minimizing damage from an ongoing attack as opposed to preventing additional attacks in the long term.
Your provider can also discuss if any clinical trials are available for you to participate in. Clinical trials are tests of new medications or uses of existing medications on humans to find new treatment options for MS and other conditions.
Multiple Sclerosis Medications
Medications for multiple sclerosis can reduce relapses (periods when symptoms worsen or new symptoms develop) and the development of new lesions/scars, and slow the disease’s progression. Common types of medications for MS include:
1. Disease-modifying therapies (DMTs): DMTs reduce how often you have relapses, slow down MS progression, and prevent new lesions from forming on your brain and spinal cord. Several medications have U.S. Food and Drug Administration (FDA) approval for long-term MS treatment.
2. Relapse management medications: For severe symptom attacks, corticosteroids (like methylprednisolone) quickly reduce inflammation by suppressing your immune system. These medications can speed up your recovery time after an attack. They also slow damage to the myelin sheath surrounding your nerve cells. Your provider may give you this medication into a vein in your arm through an IV (intravenously). Other short-term treatments for severe attacks include IV immunoglobulin therapy or plasma exchange.
DMTs for MS
Common disease-modifying therapies (DMTs) for MS and their administration types include:
1. Injections into your skin: Beta interferon, glatiramer acetate, or ofatumumab.
2. Infusions into a vein (IV): Alemtuzumab, natalizumab, rituximab, ocrelizumab, or ublituximab.
3. Oral medications (taken by mouth): Cladribine, dimethyl fumarate, diroximel fumarate, monomethyl fumarate, fingolimod, siponimod, ponesimod, ozanimod or teriflunomide.
Stem cell transplant.
How to Find the Right Multiple Sclerosis Specialist Near Me
MS specialists are neurologists. So the search begins by finding a neurologist with significant experience treating MS.
A person can ask a PCP for a referral to a neurologist. Some other strategies that can help a person widen their search include the following actions:
- Contact an MS advocacy group and ask for a list of providers in the area.
- If a friend or family member has MS, ask who they see and if they are happy with them.
- Join an MS support group and ask for feedback from local professionals.
- Look at a list of neurologists in an insurance network, then call and ask about their experience working with MS.
The first doctor a person sees might not be the right one for their needs. So it is important to keep an open mind, ask lots of questions, and work to find the right match.
A person should be comfortable with their doctor’s bedside manner and feel listened to by their doctor. They should be sure their doctor never makes them feel dismissed and should never hear their doctor make sexist or racist comments or any remarks of a prejudiced nature. Some questions to ask a doctor include:
1. What percentage of your patients have MS?
2. What, in your experience, is the outlook for a person like me?
3. How often should I expect to see you?
4. How do you handle disagreements with patients?
5. What treatments do you most often recommend?
6. If my insurance doesn’t cover a particular treatment, can you work with me on alternatives?
7. What number do I call if I have an urgent question? Can I email you directly?
8. How long does it typically take to get an appointment?
9. Will you work with my other providers?
10. What is your position on alternative and complementary medicine?
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