Many times, MS brings many more questions than answers. Oscar has received some great questions and we would like to share some of them with you!
How many kinds of MS are there?
There can be a lot of medical terminology used when discussing Multiple Sclerosis, some of the terms are included below and should be discussed with and explained by your doctor.
Clinically Isolated Syndrome (CIS) or Acute Disseminated Encephalomyelitis (ADEM) are often diagnosis used for first neurologic events suggestive of Multiple Sclerosis (MS). Symptoms last for at least 24 hours. Multiple Sclerosis is diagnosed after the second event, MRI and/or confirmation in cerebral spinal fluid (CSF).
There are 4 types of MS. The types of MS are named by how the disease acts on the body over time.
- Relapsing-Remitting MS (RRMS) is the most common form of multiple sclerosis. Approximately 85% of those diagnosed with MS are initially diagnosed with RRMS. Those diagnosed with RRMS have temporary periods with new symptoms called relapses, flare-ups or exacerbations.
- Secondary-Progressive MS (SPMS) symptoms worsen steadily over time, with or without the occurrence of relapses and remissions. Most of those diagnosed with RRMS will transition to SPMS at some point.
- Primary-Progressive MS (PPMS) is not very common and occurs in approximately 10% of people with MS. It is characterized by slowly worsening symptoms from initial onset, with no relapses or remissions.
- Progressive-Relapsing MS (PRMS) is a rare form of MS occurring in approximately 5% of those diagnosed with MS, PRMS is characterized by a steadily worsening disease state from initial onset, with acute relapses but no remissions, with or without recovery.
It is safe to say, however, that for every person who has MS, the disease can look very different from every other person with MS! There are many similarities, but no two people and their illness are the same.
Should I tell my friends/teachers I have MS?
This is a really personal decision! There are many reasons that people have for not sharing their diagnosis. However, Emily and Oscar have found that by sharing their story, they are making more friends, people are helpful and not turned off by Emily’s fatigue, and people do not pity Emily if she simply tells them she wants them to know so they understand, not so they will feel sorry for her.
Start with a few people and see how it goes for you. Be honest and let people ask questions - they will most likely have questions! Direct them to the MS Society or to Oscar if there are questions you cannot answer.
Will I have MS forever?
Scientists and doctors have not yet found a cure for MS, but there are many dedicated people working hard to get to the bottom of this problem! So for now, MS is not a disease you get rid of. However, you will probably not always feel crummy. Doctors can help you with your symptoms, so be sure to visit the doctor regularly! Look for the good days and enjoy!
What is an MS relapse or attack?
People with Relapsing/Remitting MS have periods of time when the disease is active. That means there is myelin being stripped away from the nerve somewhere in the central nervous system. The MRI is the best device we know of to actually “see” when this is happening. The person with active MS may or may not have symptoms from these relapses. That all depends on which part of the nerve is being attacked. When the disease is quiet or not active, that means the myelin is protecting the nerves as it should and there are no new “holes” in it leaving the nerve exposed.
Will I end up in a wheelchair?
While Oscar cannot predict the future, not everyone with Multiple Sclerosis ends up in a wheelchair. MOST people with MS are able to walk and run normally. Some people may have trouble with balance and coordination. Keeping up with your medications, regular exercise, and eating right, all work together to fight off relapses that may cause your legs to not function as they should - it’s not a cure, but it can help!
My sister or brother has MS, will I get it?
It can be really scary to have a family member with MS and to always wonder if you are next. Oscar has heard that it is only 3-5% more of a chance than the kid who lives next door. So, the research says you are not at much greater of a risk than you were before your family member was diagnosed.
I feel I can’t keep up in school, what should I do?
When a person has a brain injury, like a lesion, the healing can take a very long time. With MS, the brain sometimes has to figure out new ways of doing things, too. That means, your brain doesn’t get much time to just hang out! In fact, it works hard day and night! This activity can make you tired and not able to concentrate all day at school.
There are some accommodations you can request that might help you be successful. Ask your parent/guardian to talk to the school about an IEP or a 504 plan. This is a plan that is put in place to give you help when you need it. Some examples of accommodations some students ask for:
- Extra time for tests
- Quiet space to take tests
- Extra time for assignments
- Rest time in a quiet space when needed
- Dim lights in the classroom
- Wear sunglasses in school - bright lights can be exhausting!
- Wear a baseball hat for the same reason
- Use of the elevator or to have all classes on one level
- Audio textbooks or request that someone read to you
- Have someone take notes for you
- Ask for lecture outlines ahead of time so you can use them while the teacher is talking.