Learning About Multiple Sclerosis

I know two people with Multiple Sclerosis. One of them is an acquaintance and the other I have known my whole life. I have learned a few things about MS in recent years and find it is a cause I am becoming passionate about. Sometimes what you hear is either wrong or only some of the story. I decided to do some research and get the truth. Most of my info is from the National MS Society website but I am including a link to WebMD's website too.

National MS Society:
http://www.nationalmssociety.org/index.aspx

WebMD:
http://www.webmd.com/multiple-sclerosis/default.htm

These two people take different approaches to telling others about their MS. The acquaintance is a neighbor. He told me during our first conversation. He likes being open about it. He co-owns a martial arts studio. An odd coincidence is his partner is the father of one of Zach's Preschool friends. We didn't know that until his birthday party a month ago. He still teaches classes. He suspects he got it when he got lime disease. I'll refer to him as "Spiderman" from now on.

The other man is about 20 years older then my neighbor and was quiet about it for years. Decades ago he had Pneumonia and when he was over being sick he never felt quite right. He started getting tested for everything about 10 years ago. He asked that I not mention him by name so I'll refer to him as "Superman".

I knew something wasn't right when 10 years ago "Superman" broke an antique hand-wash only plate. He's never done that and my instincts kicked in. I noticed him mentioning more doctor visits in the following years. When he was going to tell me he said, "I want to tell you something." Right away I asked, "How's your health?" It was becoming more obvious so it was time to start telling people.

"Superman" said he didn't tell people right away because he didn't want to be seen as weak and incapable. It's getting harder for him to do a lot of things he used to do but he is still very capable. He always says "don't tell people you have OCD and GAD because they will treat you differently. They will see you as incapable because of them."

"Spiderman" is about 10 years older then me. We are both open about our issues for the same reason, to challenge the stereotypes in people's minds. People with MS are thought of as weak. Probably because most people keep it quiet so all we have as a capability reference are those stereotypes. Stereotypes are opinions, not facts, but we too often treat them like facts. When you know people with the disease who don't fit those stereotypes, you no longer treat the stereotypes as facts. The same is true about marriage equality and many other things.

I do have limitations with my anxiety. The biggest being a paralyzing fear of heights. People have this idea about what an anxiety disorder and OCD look like. When you hear OCD you think "turns lights on and off 50 times when entering and leaving a room". That's true sometimes but other cases are like mine. That example just requires reading the right posts on this blog. My garden layouts are a great example of that. I still have those layouts but are still modifying them. To make the layouts easier to make, I made these charts:

Spring
	Pansy	Daffodil	Hyacinth	Tulip	Daisy	Marigold	Begonia	Cabbage	Spruce	Décor
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
Summer
	Pansy	Marigold	Begonia	Daisy	Special	Aster	S. Mums	Décor
1
2
3
4
Fall
	Marigold	Begonia	Daisy	Special	Aster	S. Mums	Mums	Cabbage	Spruce	Pumpkin	Décor
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
Winter
	Cabbage	Spruce	Décor
1
2
3
4

Too often we hear that someone has some disease or disorder and think lesser of them. We all have problems so we all have weaknesses. They don't make some people lesser. "Superman" has had his MS so long most people are surprised that he doesn't need his cane that often. Like I said, he's in his mid 60s. Some of his issues are due to his age. "Spiderman" is in his mid 40s. What I see in "Spiderman" is what I saw in "Superman" when "Superman" was in his mid 40s.

In black is what I know before the research. The researched answers are in red.

1. It makes white blood cells attack the part that covers the nerves. I forget what that coating is called.

As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/what-is-ms/index.aspx

2. You experience pain even when there isn't a physical problem at the site.

In multiple sclerosis, damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.Over the course of the disease, some symptoms will come and go, while others may be more lasting.

Pain syndromes are common in MS. In one study, 55% of people with MS had "clinically significant pain" at some time. Almost half were troubled by chronic pain.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx

3. You become very sensitive especially to strong heat and cold.

Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

Some people with MS notice that symptoms, particularly spasticity, become worse in cold weather. It is generally recommended that people with MS who are sensitive to temperature try to avoid extremes of either hot or cold, and that people who are considering a move to a "better" climate try to visit first to see if the climate change is, indeed, beneficial.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/heattemperature-sensitivity/index.aspx

4. It's not curable but there is medicine to help slow it down. The most effective being a daily shot.

Although there is still no cure for MS, effective strategies are available to modify the disease course, treat exacerbations (also called attacks, relapses, or flare-ups), manage symptoms, improve function and safety, and provide emotional support. In combination, these treatments enhance the quality of life for people living with MS.

FDA-Approved Disease-Modifying Agents

• Aubagio (teriflunomide)
• Avonex (interferon beta-1a)
• Betaseron (interferon beta-1b)
• Copaxone (glatiramer acetate)
• Extavia (interferon beta-1b)
• Gilenya (fingolimod)  
• Novantrone (mitoxantrone)
• Rebif (interferon beta-1a)
• Tecfidera (dimethyl fumarate)
• Tysabri (natalizumab)

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx


5. You can have it for years and never know it.
 I couldn't find something on this answer but I saw it in "Superman" so I know it can happen.

What I do know is right but here are some things I didn't know before:

1. This is what you need to get a MS diagnosis

• Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
•  Find evidence that the damage occurred at least one month apart AND
• Rule out all other possible diagnoses

These are the tests they do.

• Medical History and Neurologic Exam
• MRI
• Visual Evoked Potential (VEP)
• Cerebrospinal Fluid Analysis
• Blood Tests

2. These are other conditions that can effect Myelin

Other Conditions Cause Demyelination (Damage to Myelin)

• Demyelination in the Central Nervous System
  Although MS is the most common, other conditions can damage myelin in the CNS, including viral infections, side effects from high exposure to certain toxic materials, severe vitamin B12 deficiency, autoimmune conditions that lead to inflammation of blood vessels (the "collagen-vascular diseases"), and some rare hereditary disorders.
• Demyelination in the Peripheral Nervous System
  Demyelination of the peripheral nervous system (the nerves outside the brain and spinal cord) occurs in Guillain-Barré Syndrome. After some injuries, the myelin sheath in the peripheral nervous system regenerates, bringing recovery of function.

Some demyelinating conditions are self-limiting, while others may be progressive. Careful (and sometimes repetitive) examinations may be needed to establish an exact diagnosis among the possible causes of neurologic symptoms.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/index.aspx

Here are the symptoms:

3. Symptoms

Most Common Symptoms
Some symptoms of MS are much more common than others.

Fatigue

Fatigue is one of the most common symptoms of MS, occurring in about 80% of people. Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.
Learn more about Fatigue

Numbness

Numbness of the face, body, or extremities (arms and legs) is one of the most common symptoms of MS, and is often the first symptom experienced by those eventually diagnosed as having MS.
Learn more about Numbness

Walking (Gait), Balance, & Coordination Problems

Problems with gait (difficulty in walking) are among the most common mobility limitations in MS. Gait problems are related to several factors.
Learn more about Gait Problems

Bladder Dysfunction

Bladder dysfunction, which occurs in at least 80% of people with MS, usually can be managed quite successfully
Learn more about Bladder Dysfunction

Bowel Dysfunction

Constipation is a particular concern among people living with MS, as is loss of control of the bowels. Diarrhea and other problems of the stomach and bowels also can occur.
Learn more about Bowel Dysfunction

Vision Problems

A vision problem is the first symptom of MS for many people. The sudden onset of double vision, poor contrast, eye pain, or heavy blurring is frankly terrifying-and the knowledge that vision may be compromised can make people with MS anxious about the future.
Learn more about Vision Problems

Dizziness and Vertigo

Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, they have the sensation that they or their surroundings are spinning, a condition known as vertigo.
Learn more about Dizziness and Vertigo

Sexual Dysfunction

Sexual problems are often experienced by people with MS, but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response—including arousal and orgasm—can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.
Learn more about Sexual Dysfunction

Pain

Pain syndromes are common in MS. In one study, 55% of people with MS had "clinically significant pain" at some time. Almost half were troubled by chronic pain.
Learn more about Pain

Cognitive Dysfunction

Cognition refers to a range of high-level brain functions, including the ability to learn and remember information: organize, plan, and problem-solve; focus, maintain, and shift attention as necessary; understand and use language; accurately perceive the environment, and perform calculations. Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition.
Learn more about Cognitive Dysfunction

Emotional Changes

Emotional changes are very common in MS—as a reaction to the stresses of living with a chronic, unpredictable illness and because of neurologic and immune changes caused by the disease. Bouts of severe depression (which is different from the healthy grieving that needs to occur in the face of losses and changes caused by MS), mood swings, irritability, and episodes of uncontrollable laughing and crying (called pseudobulbar affect) pose significant challenges for people with MS and their family members.
Learn more about Emotional Changes

Depression

Depression is common during the course of multiple sclerosis. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions.
Learn more about Depression

Spasticity

Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.
Learn more about Spasticity

Less Common Symptoms
These symptoms also occur in MS, but much less frequently.

Speech Disorders

Speech and voice problems occur in approximately 25-40 percent of people with MS, particularly during relapses or periods of extreme fatigue. The problems are of two types—dysarthria refers to changes in the production of speech, including slurring, unclear articulation of words, and difficulty controlling loudness; dysphonia is the term used for changes in voice quality, including hoarseness, breathiness, nasality, poor control of pitch.
Learn more about Speech Disorders

Swallowing Problems

Swallowing problems—referred to as dysphagia—result from damage to the nerves controlling the many small muscles in the mouth and throat. When dysphagia occurs, food and liquids can pass into the airway and lungs, causing the person to cough and choke. Because particles that remain in the lungs can cause aspiration pneumonia—a serious complication of MS—prompt evaluation and treatment by a speech/language pathologist are essential.
Learn more about Swallowing Problems

Headache

Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.
Learn more about Headaches

Hearing Loss

Hearing loss is an uncommon symptom of MS. About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease. Deafness due to MS is exceedingly rare, and most acute episodes of hearing deficit caused by MS tend to improve.
Learn more about Hearing Loss

Seizures

Seizures, which are the result of abnormal electrical discharges in an injured or scarred area of the brain, are fairly uncommon among people with MS. Their incidence has been estimated at 2% to 5%, compared to the estimated 3% incidence of seizures in the general population.
Learn more about Seizures

Tremor

Many people with MS experience some degree of tremor, or uncontrollable shaking. It can occur in various parts of the body.
Learn more about Tremor

Respiration / Breathing Problems

Respiration problems occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles. Aspiration pneumonia (resulting from the food particles and/or liquids passing into the lungs) can also make breathing more difficult. Breathing problems, which can contribute to MS-related fatigue and interfere with speech and voice production, should be evaluated and treated by nurses or rehabilitation professionals with expertise in respiratory problems.
Learn more about Respiration Problems

Itching

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx

4. The link below is what causes MS. They don't know for sure but they do know there are many possibilities.

It is now generally accepted that MS involves an immune-mediated process—an abnormal response of the body’s immune system that is directed against the myelin (the fatty sheath that surrounds and insulates the nerve fibers) in the central nervous system (CNS—the brain, spinal cord and optic nerves). The exact antigen, or target that the immune cells are sensitized to attack, remains unknown -- which is why MS is considered by most experts to be immune-mediated rather than autoimmune. In recent years, however, researchers have been able to identify which immune cells are mounting the attack, some of the factors that cause them to attack, and some of the sites, or receptors, on the attacking cells that appear to be attracted to the myelin to begin the destructive process. Ongoing efforts to learn more about the immune-mediated process in MS—what sets it in motion, how it works, and how to slow or stop it—are bringing us closer to understanding the cause of MS.

Environmental

MS is known to occur more frequently in areas that are farther from the equator. Epidemiologists—scientists who study disease patterns—are looking at many factors, including variations in geography, demographics (age, gender, and ethnic background), genetics, infectious causes, and migration patterns, in an effort to understand why. Studies of migration patterns have shown that people born in an area of the world with a high risk of MS who then move to an area with a lower risk before the age of 15, acquire the risk of their new area. Such data suggest that exposure to some environmental agent that occurs before puberty may predispose a person to develop MS later on.

Some scientists think the reason may have something to do with vitamin D (.pdf), which the human body produces naturally when the skin is exposed to sunlight. People who live closer to the equator are exposed to greater amounts of sunlight year-round. As a result, they tend to have higher levels of naturally-produced vitamin D, which is thought to have a beneficial impact on immune function and may help protect against autoimmune diseases like MS. The possible relationship between MS and sunlight exposure is currently being looked at in a Society-funded epidemiological study in Australia.
Other scientists study MS clusters—which are defined as higher-than-expected numbers of cases of MS that have occurred over a specific time period and/or in a certain area. These clusters are of interest because they may provide clues to environmental (such as environmental and industrial toxins, diet, or trace metal exposures) factors that might cause or trigger the disease. So far, cluster studies have not produced clear evidence for the existence of any triggering factor or factors in MS.

Infectious

Since initial exposure to numerous viruses, bacteria and other microbes occurs during childhood, and since viruses are well recognized as causes of demyelination and inflammation, it is possible that a virus or other infectious agent is the triggering factor in MS. More than a dozen viruses and bacteria, including measles, canine distemper, human herpes virus-6, Epstein-Barr, and Chlamydia pneumonia have been or are being investigated to determine if they are involved in the development of MS, but none have been definitively proven to trigger MS.

Genetic

While MS is not hereditary in a strict sense, having a first-degree relative such as a parent or sibling with MS increases an individual's risk of developing the disease several-fold above the risk for the general population. Studies have shown that there is a higher prevalence of certain genes in populations with higher rates of MS. Common genetic factors have also been found in some families where there is more than one person with MS. Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an autoimmune response. Sophisticated new techniques for identifying genes may help answer questions about the role of genes in the development of MS.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/what-causes-ms/index.aspx

My guess is that if a symptom is bad enough to get checked out they'll check for other things first to rule MS out. If you have a lot of those symptoms it's worth looking into but I sure hope you don't have it! I hope you learned as much as I did about MS from this post. "Spiderman" and "Superman" are both awesome people and I offer to help when needed. They are both getting weaker physically as time passes and I can see a difference but I also see two men who aren't giving up. They each push themselves physically each day to slow progression and stay active but don't overdo it. I don't think lesser of them knowing they have MS. Knowledge is power. The more people we hear about or meet who don't fit the stereotype the less we treat the stereotype as fact.

I respect "Superman" and those like him who don't want to talk about it because they don't want to be seen as lesser, weak, or incapable but I like being like "Spiderman". Others see the diseases/disorders differently when they meet different people who have them. Usually, the initial reaction is surprise and/or denial. "You can't possibly have that, you don't look/act like you have it". These comments never come from Doctors. They come from people who have heard the stereotype but haven't see the reality.