What Is Multiple Sclerosis - MS?
Multiple Sclerosis (MS), is commonly thought to be an autoimmune disorder in which the body’s immune system attacks the myelin sheath that surrounds the nerve cells. Researchers are not yet sure what causes multiple sclerosis and how one may get multiple sclerosis.
Read more facts about Multiple Sclerosis.
Damage to the myelin sheath is caused by inflammation and can occur anywhere in the central nervous system, including the brain and spinal cord. The optic nerves of the eye are also frequently affected.
Multiple Sclerosis is a chronic autoimmune disease that affects the nervous system. It is often difficult to diagnose Multiple Sclerosis because the symptoms of MS come and go, and may also mimic other diseases. The symptoms of MS can be some combination of the following:
- Vision loss
- Poor coordination
- Slurred speech
- Tremors
- Numbness
- Fatigue
- Issues with memory and concentration
- Paralysis
The life expectancy for those with Multiple Sclerosis is generally normal; and the prognosis for MS is generally good - MS is not considered a fatal disease. While being diagnosed with MS may make you feel very alone, there are approximately 400,000 Americans living with MS. Worldwide, there are approximately 2.5 million people who receive a diagnosis of multiple sclerosis.
MS is diagnosed in more women than men, and people with Multiple Sclerosis are usually diagnosed between the ages of 20 and 50, although MS can occur in young children, teenagers, and older adults.
Read more about autoimmune diseases.
What To Expect After A Diagnosis Of Multiple Sclerosis:
A new diagnosis of a disease like Multiple Sclerosis can leave one both terrified and bewildered, uncertain about the future. One of the most powerful things a newly diagnosed person with MS can do is to learn as many facts as possible from credible, scholarly sources to help make informed, appropriate treatment decisions for Multiple Sclerosis.
Expect to grieve a diagnosis like Multiple Sclerosis. While symptoms of MS may not be present in order to have it, being diagnosed with a lifelong, autoimmune condition without a cure can make even the strongest fall to our proverbial knees.
The stages of grief are anger, denial, bargaining, depression, and acceptance. While you may not follow a set pattern of grieving (as in, you don't have to first go through anger to start the grieving pathway), chances are that your emotions will run the gamut as you learn about your new diagnosis.
Don't hesitate to reach out to a therapist if you're having problems coping with the highs and lows of your new condition.
There are four types of Multiple Sclerosis:
- Relapsing/Remitting MS (RRMS) - the most common form of MS
- Secondary/Progressive MS (SPMS)
- Progressive/Relapsing MS - the least common form of MS
- Primary/Progressive MS
Ask the doctor who has diagnosed your Multiple Sclerosis which type you have been diagnosed with, the symptoms you can expect, and the general stages you can expect to go through.
The life expectancy for those with Multiple Sclerosis is generally normal.
As Multiple Sclerosis is an autoimmune disease, the symptoms come and go; which may make you wonder: Do I have Multiple Sclerosis? Was my doctor wrong diagnosing me?
While MS is a fairly common autoimmune disorder, like other types of chronic illness, the disease course varies WILDLY for each person. So just because someone you know has MS doesn't mean your symptoms will be the same.
Also to note: symptoms of MS are unpredictable and varying for each individual person who has it, making it very challenging to figure out what happens next.
It's important that you trust your MS treatment team. If you've met with a doctor and you dislike him or her, don't hesitate to get a second (third or fourth!) opinion.
Rehabilitation - such as physical therapy, occupational therapy, speech therapy, vocational therapy - is vital for all people who have MS, even in the early phases of the disease.
Managing your MS is going to be an ongoing process throughout the course of the disease. Make sure your treatment team has your best interests in mind - and don't hesitate to speak up and ask questions.
You are your own best advocate. That means, when treatments are offered (or, alternately, you're "told" what you need to do) make sure you understand fully the how's and the why's. If your doctor doesn't make the time to explain it, find another doctor. You should never feel as though you're "annoying" your doctor by asking questions.
Find a local support group for people who have MS. Not only will you be able to pick up some tips and tricks for living with MS, but you'll be around people who have been where you are.
Invite friends and family (if you have told them about your MS diagnosis) to go along to these group meetings to get a better idea of the struggles you will face.
Many people newly diagnosed with MS quit their jobs at the urging of their family and/or physician in a snap-decision. Before making a rash decision, remember that there are a good number of disease-modifying treatments, technologies, symptom management strategies and community resources available to you.
Many people who have MS go on to work for a long time. Others quit their jobs. It's your choice: just be sure to make an informed decision.
Put together a list of questions before each doctor's visit. This is incredibly important so you can avoid "white coat" syndrome.
Don't go to doctor's appointments alone. Make sure to bring someone else along to take notes when you ask questions.
What To Expect While Living With Multiple Sclerosis:
Treatment for Multiple Sclerosis will likely begin before you may show any symptoms. Why? Because even while asymptomatic, your body may be doing damage to your organs.
Work with your treatment team to manage acute MS episodes. Make sure you know precisely what you are to do if you have a flare-up.
Wellness and health are both very important for those who have Multiple Sclerosis. Once you are living with MS, you must work to be as healthy as possible.
Exercise is essential. Even moderate aerobic exercise (approved, of course, by your treatment team) has health benefits: improving your mood, improves heart health, and can help to manage symptoms like fatigue, bowel and bladder difficulties, and weakness.
A healthy low-fat, high fiber diet is a good diet to follow. While a good diet won't cure MS, it can help ensure you're in the best of shape and promote healthy bowel functioning.
Trim back any stresses you are able to. You don't need to be everything to everyone. While, again, studies cannot provide a common link between stress and MS, it's obvious that stress is not good for anyone.
While it's completely your prerogative, some people find strength in telling others that they have Multiple Sclerosis. This can improve the feelings of isolation that go hand-in-hand with mental illness as well as provide you someone to lean on when times are rough.
If others know about your MS, don't hesitate to tell them what you need from them. Many times, those who love us very much are at a loss for how, specifically to help. It's up to you to tell them what you need.
Make sure that you and your partner are on the same page - a chronic illness puts a tremendous stress upon a relationship. If you and your partner are struggling, don't hesitate to talk to a therapist or marriage counselor. There's no reason to face MS alone.
Have your partner come with you to the MS support group meetings - maybe he or she can meet other spouses of people who have MS and learn some new and effective coping strategies.
If you and your partner have children, it's important that they know a bit about your condition. It may be hard to talk about MS with your kids, but if you don't tell them what is going on, your children may assume the worst.
Acknowledge that living with a chronic and unpredictable illness is very challenging - both physically or emotionally - for you and for your caregivers.
Read more about caregiving.
Don't hesitate to tap into all resources available to you - family, friends, loved ones.
Don't hesitate to ask for help when you need it - there's no shame in needing some extra assistance.
What To Expect In The Later Stages of Multiple Sclerosis:
As MS progresses, it can leave you increasingly unable to perform activities of daily living on your own, which means you'll be in need of more and more assistance from caregivers.
Know that caregiver abuse does happen - and in no circumstances is abuse appropriate. If a caregiver begins to abuse you - even if it's "just" emotional abuse, report the abuse to local authorities. There's no such thing as an "okay" amount of abuse.
You may feel trapped in your diagnosis, as though you have no way out. If you develop depression, don't be afraid to bring up your mental health with your MS treatment team. Mental health is as important as physical health, and the progression of MS may be hard to cope with.
Work with your Multiple Sclerosis team to make sure you're able to be as independent and symptom-free as possible.
There are a number of types of assistive technology available out there for someone with MS. Before purchasing anything too expensive, check to see what is covered by your insurance.
The use of assistive technology does not mean that you're a failure or that you're disabled - reframe your thinking about these devices. Instead of saying, "I can't believe I have to use a cane," think, "isn't this great? I can get around with my cane." Using assistive technology can make you MORE independent, not less.
ALWAYS get pre-approval from your insurance company if you need any assistive devices - many insurance companies have preferred providers and if you do not use these preapproved providers, you may be paying more out of pocket for a very similar product.
Make certain that your doctor, therapist, or treatment team has a prescription for any of these assistive devices. Insurance companies may balk at paying otherwise.
These pieces of durable medical equipment (insurance slang) can include the following:
- Wall grab bars in the bathroom and around the bathtub can make it a lot easier to get in and out of the shower.
- Electric can openers, special knives (rocker knives) and cookware designed to be easy on the wrist can make cooking more simple.
- Use velcro - instead of buttons - on clothes.
- Button and zipper hooks can help fasten clothes more easily.
- Hairbrushes can be fitted with handles that make them easier to hold.
- There are special grips designed to allow you to use pens and pencils.
- Braces, canes, and walkers can be used by people who have trouble walking.
- For additional assistance, there are many types of scooters and wheelchairs available.
- Some people may be allowed to drive using low-energy steering wheels and other types of assistive devices.
Check with your insurance company to see if they offer skilled home health care, even if you do not currently require it. Most private insurance companies will pay a certain amount for skilled home health care (therapists and nurses) but not a home health aide. It's important to know how many visits are allowed and of what type.
If your private insurance company balks at paying for home health care aides, Medicare/Medicaid will often cover the costs.
Make sure you have an up-to-date will as well as some advance directives in place so that your family knows your wishes regarding your medical care should you become unable to make them yourself.
Read more about advance directives.
Talk with your caregivers and make sure you have several backup caregivers to give your primary caregiver a break. Without a break, caregiver burnout is common.
Read about caregiving.
Encourage your caregivers to attend a support group for caregivers in order to learn coping skills, trade stories, and discuss other ways of handling being a caregiver to someone with a chronic illness.
Have any other tips for what to expect while living with multiple sclerosis? Email bandbacktogether@gmail.com!
