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10 Things You May Not Know About MS (Multiple Sclerosis)

10 Things You May Not Know About MS (Multiple Sclerosis)

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.

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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.

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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.

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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.

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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.

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Last Updated on September 20, 2018

How to Stay Calm and Cool When You Are Extremely Stressful

How to Stay Calm and Cool When You Are Extremely Stressful

Being in a hurry all the time drains your energy. Your work and routine life make you feel overwhelmed. Getting caught up in things beyond your control stresses you out…

If you’d like to stay calm and cool in stressful situations, put the following 8 steps into practice:

1. Breathe

The next time you’re faced with a stressful situation that makes you want to hurry, stop what you’re doing for one minute and perform the following steps:

  • Take five deep breaths in and out (your belly should come forward with each inhale).
  • Imagine all that stress leaving your body with each exhale.
  • Smile. Fake it if you have to. It’s pretty hard to stay grumpy with a goofy grin on your face.

Feel free to repeat the above steps every few hours at work or home if you need to.

2. Loosen up

After your breathing session, perform a quick body scan to identify any areas that are tight or tense. Clenched jaw? Rounded shoulders? Anything else that isn’t at ease?

Gently touch or massage any of your body parts that are under tension to encourage total relaxation. It might help to imagine you’re in a place that calms you: a beach, hot tub, or nature trail, for example.

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3. Chew slowly

Slow down at the dinner table if you want to learn to be patient and lose weight. Shoveling your food down as fast as you can is a surefire way to eat more than you need to (and find yourself with a bellyache).

Be a mindful eater who pays attention to the taste, texture, and aroma of every dish. Chew slowly while you try to guess all of the ingredients that were used to prepare your dish.

Chewing slowly will also reduce those dreadful late-night cravings that sneak up on you after work.

4. Let go

Cliche as it sounds, it’s very effective.

The thing that seems like the end of the world right now?

It’s not. Promise.

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Stressing and worrying about the situation you’re in won’t do any good because you’re already in it, so just let it go.

Letting go isn’t easy, so here’s a guide to help you:

21 Things To Do When You Find It Hard To Let Go

5. Enjoy the journey

Focusing on the end result can quickly become exhausting. Chasing a bold, audacious goal that’s going to require a lot of time and patience? Split it into several mini-goals so you’ll have several causes for celebration.

Stop focusing on the negative thoughts. Giving yourself consistent positive feedback will help you grow patience, stay encouraged, and find more joy in the process of achieving your goals.

6. Look at the big picture

The next time you find your stress level skyrocketing, take a deep breath, and ask yourself:

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Will this matter to me…

  • Next week?
  • Next month?
  • Next year?
  • In 10 years?

Hint: No, it won’t.

I bet most of the stuff that stresses you wouldn’t matter the next week, maybe not even the next day.

Stop agonizing over things you can’t control because you’re only hurting yourself.

7. Stop demanding perfection of yourself

You’re not perfect and that’s okay. Show me a person who claims to be perfect and I’ll show you a dirty liar.

Demanding perfection of yourself (or anybody else) will only stress you out because it just isn’t possible.

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8. Practice patience every day

Below are a few easy ways you can practice patience every day, increasing your ability to remain calm and cool in times of stress:

  • The next time you go to the grocery store, get in the longest line.
  • Instead of going through the drive-thru at your bank, go inside.
  • Take a long walk through a secluded park or trail.

Final thoughts

Staying calm in stressful situations is possible, all you need is some daily practice.

Taking deep breaths and eat mindfully are some simple ways to train your brain to be more patient. But changing the way you think of a situation and staying positive are most important in keeping cool whenever you feel overwhelmed and stressful.

Featured photo credit: Brooke Cagle via unsplash.com

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