Do you know much about multiple sclerosis? If you do, it may be because you know someone who has it. I have a family member I’m fairly close with who has it and have heard from her about her condition for over ten years as it took control of her life. I’ve watched videos, read articles about promising treatments, and did some research. Sometimes what doctors and scientists don’t know is more alarming than what they do know. Right now, there are only treatments, no cures, and over 2.3 million people diagnosed to have multiple sclerosis.
But even if you are familiar with MS, here are 10 things you likely do not know. Share the knowledge. Awareness is a step toward a cure.
1. There are 4 types of MS, but people will exhibit symptoms that are individual to them.
There are 4 types of disease courses identified in multiple sclerosis: relapsing-remitting MS (RRMS), primary-progressive MS (PPMS), secondary-progressive MS (SPMS), and progressive-relapsing MS. Within each “course,” there are varying degrees of severity. One person may be high functioning while another person with the same course could be considered disabled. Some people with the most severe symptoms in a course might need a caretaker. Regardless of being diagnosed with the same course of MS, the symptoms will be individual to each person. One person may experience severe memory loss while another person can lose control of their bladder intermittently while having some memory loss. Some people experience tremors. Others may experience blindness.
2. MS symptoms can be exacerbated.
Have you ever got a headache that worsened with noise? Or do you seem to get neck pain only when you have to take a test? Some stress has exacerbated your pain. MS symptoms can be manageable, like a light headache, but then they can be worsened when the sufferer experiences warmer than comfortable temperatures or when confronted by people that emotionally threaten them in some way. They experience stress acutely. A once sociable person may not be able to suffer the company of more than one person at a time or only can stand the company of people who are considerate about their condition. Stressful events, like an unpleasant medical procedure, can worsen symptoms. This is called exacerbation. It is life altering.
3. MS is difficult to diagnose and can take YEARS to rule in while ruling out other possibilities.
Yes, I thought a doctor could just look at some blood samples and ask some questions and make some observations and then POOF! you’d have your diagnosis. No. It actually can be a long process. Doctors unfamiliar with MS as well as doctors who are familiar with it can take a long time making a proper diagnosis. And remember, there are varying types of MS called “courses” and each has varying degrees of severity. Then you have each person with their individual symptoms. So while people may guess a person has MS, there are blood tests and biopsies that have to be done by specialists who know what they are supposed to be ruling out before they can rule in MS. It can, and often does, take years to diagnose. MRI (a brain scan) is used to diagnose 90% of all cases at this point in time, but it is still just one of many tests that have to be completed. The MRI only shows swelling.
4. MS can’t be cured; symptoms can only be lessened and treatments can be extreme.
Although experimental treatments and hopeful research for a cure make headlines, there are no headlines for the fact that people get the disease and then can only hope to manage symptoms and hope to lessen them. If a person with MS is lucky, their MS will lighten up for long periods of time or seem to disappear. It never goes away, but it does not get worse. If the person is unlucky, they get hit hard, don’t get any periods of relief, and continue to worsen even with medication and chemo treatments. The person I have in my life went as far as to have her eye muscles cut so her eyes would stop shaking. The shaking, after doing other treatments, including chemo, had not subsided and she was sick to her stomach from the constant eye movement. Other treatments to stop tremors have included the injection of a neurotoxin to cause partial or complete paralysis of specific muscles; this was done in an effort to regain control so she could walk more confidently and not suffer dizziness and nausea. She was able to gain some quality of life back, however, she never regained full function of anything affected by the MS.
5. MS symptoms can come and go over a lifetime.
You may think you know your own MS, but then it can suddenly change. You may regain bladder control, but then your short term memory really starts to fail you so you can’t remember who you just talked to on the phone. Then, just as suddenly, it can switch back. You may even feel you can walk without the assistance of a walker for days, then suddenly, wham! you fall just walking down the hall. You just don’t know how things are going to change. The unpredictability and loss of control are emotionally hard on even the most even-tempered of people. One day you can see or write your name, then suddenly you can’t do either, and you don’t know why. It just happens. Not only do the changing symptoms and severity make it hard to diagnose, but it makes it hard to predict the future. How much help could a person need? How independent can they live?
6. Pain and sleeplessness are common symptoms of MS.
Over 50% of MS sufferers have pain and sleeplessness which exacerbate symptoms. They increase MS’s symptoms’ severity, then in turn, the pains, including headaches like migraines, and sleeplessness, get worse. Keeping cool and taking naps, avoiding stimulation and exertion, become critical. What is also critical is taking things to help the person sleep and be in less pain. The management of MS is ceaseless.
7. MS is expensive.
I think the thing many people don’t ingest about chronic illnesses is the expense. To make it real, you need to understand that it costs $20,000 to $30,000 a year. That is more money a year than many earn as a salary. A full-time school teacher can start at $35,000. Thirty-thousand is the cost of a nice, new car. It is a down payment on a house. And that only covers the medications. People try to qualify for assistance any way they can, and some volunteer to be test subjects of new, experimental treatments. Their bodies and their income are ruled by MS once it takes over. Some continue to work; others will not be able to work. Those suffering the severe courses of MS will no longer have money for the luxuries others take for granted like specialty coffees, cell phones, and television. But then again, they may have had to stop drinking coffee because of caffeine. They may not be able to see the cell phone to dial a number. They may not be able to see the tv to turn it on.
8. MS changes what you can and should eat.
A healthy diet can help everyone, maybe especially those with MS, however, it becomes extreme for MS sufferers. because they become super-sensitive to caffeine, preservatives, fats, sodium, and other not-so-good things. It also gets theoretical, with fad or faux recommendations that hype super foods for curing or cursing a person’s internal systems making it harder for people to make sound decisions by confusing them. But the truth is, foods affect each person on an individual basis and there is no study that can say this diet is going to help or hurt. Just eat healthy is what all articles of substance say, and know that the person with MS ultimately will have to be the best judge of how processed food, sweets, and caffeine are effecting them. Here is a thread on the web that demonstrates how varied MS sufferers’ reactions to caffeine can be; some people were even helped by coffee consumption while others were hurt by it.
9. Exercise is critical for people with MS.
It is good for everyone to get regular exercise, point blank, but people with MS have got to exercise like their lives depend on it because it does. To retain a quality of life with less pain, more sleep, and more mobility without assistance, people with MS have to exercise regularly. It isn’t comfortable or easy. It is far from it. But the cost of not exercising is too steep because it is like opening the gate wide to MS and allowing it to walk all over you. And that brings me to number 10, people with MS have to become fighters.
10. People with MS have to be fighters or become fighters.
The reality is that MS will make its presence known and its power felt at every opportunity. MS is a ravenous enemy. It wants total control of the body and doesn’t care how miserable the person becomes. It even thrives on the person’s frustration, anger, and depression. It blooms. It consumes strength faster as the muscles atrophy. It disrupts sleep so the person’s thinking becomes more confused, repetitive, and incomplete. It unhinges emotions so that tears and laughter erupt with less control. People with MS have to get up every day resolved to eat well, exercise regularly, rest often, and keep a regular schedule that can include weekly doctor appointments. They become dependent on a healthy routine to keep them safe from the enemy. They need friends, family, and medical professionals to support them in their daily battles.
When it comes to chronic illnesses like MS, I would be surprised if someone could deal with it alone. MS steals away independence and self-control. But people are raising awareness, raising money, and working to find a cure. To learn more about how you can help, visit the Get Involved page of the National Multiple Sclerosis Society website.