Stepping into smileyman's life--A Personal Look at Multiple Sclerosis

This month is the National Multiple Sclerosis' fundraising drive. They are the largest MS society in America and do most of the research involved in finding a cure for the disease. I may not have mentioned it before, but mrs smileyman has MS. She was diagnosed at the age of 17 with the disease, but first started experience symptoms at age 12. She's 28 now, so has lived with this for more than half of her life. Let me tell you a little about her experiences with it and what multiple sclerosis is and what it does to a person. 

It started when she was 12. Her legs were numb all the time and she couldn't figure out why. Since they had just moved from Oklahoma to Idaho she figured that she was just cold, so she cranked up the heat in her room.

When she took showers though, she noticed that she couldn't feel hot water. For a long time she assumed that the heating in their new house didn't work, until one day she asked her mother about it. She looked worried and replied that "No, the water heater works fine".

Thus began the first of what would be many doctor visits.

What is Multiple Sclerosis?

Multiple Sclerosis (MS for short) is an auto-immune disease, in which the body turns on itself. In this case the victim is the myelin sheath that protects the nerves. Think of the myelin sheath has the rubber coating around electrical wires. When the body attacks these they become frayed and damage the nerves. The body forms scar tissue around these (sclerosis), thus the name of the disease.

She was happy she was involved in her church. For awhile there she hadn't had been able to have any energy to do anything at all. She slept in late, got up and ran a couple of errands, then took an afternoon nap. She was able to be up when her husband came home from work, but she went to bed early. So tired all the time, but at least she could get involved with the teenage girls in the church youth program.

One Sunday morning she was having a meeting with her advisors when she suddenly couldn't speak. It wasn't the typical "brain cramp" that many of us have--no words whatsoever would come out. She burst into tears and dismissed her meeting. When her husband came home from his meeting she still couldn't talk and was in panic. The only communication was by writing. The next day all was back to normal, but she never forgot that feeling.


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. Paraylsis can occur (though it's not commoon). So can blindness. 75% of those diagnosed with MS end up having to use some sort of device to help them walk within 10 years of their diagnosis. 

 

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. Those who suffer from fatigue are always tired, no matter how much sleep they get. 


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.


Walking (Gait), Balance, & Coordination Problems
Problems with gait (difficulty in walking) are among the most common mobility limitations in MS.


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


Bowel Dysfunction
Constipation is a particular concern among people living with MS, as is loss of control of the bowels.

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.


Dizziness and Vertigo
Dizziness is a common symptom of MS. People with MS can feel off balance or dizy, or suffer from extreme vertigo.

Sexual Dysfunction
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.


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.


Cognitive Function
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.


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.


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.


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.


They were finally pregnant. After three years of marriage, three years of hopes and crushed dreams they were having a baby boy. She knew it was going to be a tough pregnancy. She'd have to quit most of her medications for fear of them crossing the placenta wall and harming the baby. She was ok with that--she could deal with pain. One morning though, she woke up and started spasming. Imagine an epileptic's seizure, only in this case it just affects the lower half of the body. Even scarier, an epileptic is unconscious during their seizure--she was totally conscious. Aware of everything that was happening, but completely unable to control it. They never lasted long, a few seconds at most, but they happened nearly every day. Seems that her body was reacting to the drug withdrawal by creating a new symptom for her. Worried for her safety and that of her unborn child, she talked to her neurologist. He suggested baclofen as an anti-spasticity drug. "It'll be safe", he said. "Safer than zanaflex or skelaxin at any rate."

The day finally happened. A fine boy, born two weeks early. In all respects a healthy boy. Only he suffered from seizures too (at least that's what they looked like). After three days in the NICU at the local hospital, the doctors threw up their hands and sent him down to Primary Children's in Salt Lake City, where the specialists said that it was medication withdrawal. He stayed there for a week and a half before finally coming home.


While MS is not thought to be hereditary, it can cause some not so obvious family related problems. A low immune system can passed on to children. Trying to raise a family is tough enough--managing a sometimes debilitating disease makes it even tougher. We don't know what causes MS. Since we don't know the cause we can't find a cure--the best we can do is treat the symptoms and manage the pain as best we can.

Health care costs are exorbitant--mostly because of medication costs. On an average year my insurance company spends $80-90,000 on drugs. The two week stay in NICU for our son was $115,000. I thank the Lord that I have great health insurance throughy my job, but if I were to lose that job we'd be bankrupt in a year.

If you can spare a couple of dollars a donation to the National MS Society will go a long way towards funding research. If you can't spare the change, but have some free time find your local chapter and volunteer.

If you're in southeast Idaho and would like to participate in the Idaho Falls MS walk, shoot me an email at smileyman2002 at hotmail.com and I'll give you all the details.


National MS Society
National MS Society

Find Your Local Chapter
Find Your Chapter

Donate to our team. (Team name is MS Free World)
Donate


If nothing else, spend a few minutes to acquaint yourself with the disease. Chances are you know someone who has been afflicted with it, especially if you live in the Northwest. We don't know what causes it and until we know that we can't work on a cure. The best we can do is manage symptoms, but that's expensive to do. Cheaper and more effective drugs are needed, but that takes money. 

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