I have MS
A Book for
Friends of Teens
have a disease called multiple sclerosis. There are not too many
children that have this disease, but you may know an adult that
Let Me Tell You More
The central nervous system (CNS) consists of the brain, spinal
cord, and the optic
nerves. Protecting the nerve fibers of the CNS is a protective
insulation called myelin.
This helps nerve fibers conduct electrical impulses.
MS is a disease of the CNS. The immune system goes haywire and
attacks the myelin.
It attacks in many areas (mUltiple) and leaves scar tissue
(sclerosis). This affects the
brains ability to send and receive messages. Think of the CNS as
thousands of electrical wires. A mouse gets in and chews the
wires in many places. Then you get some electrical tape to try
to fix the damage. The places you patch will work again, but not
as good as before. There may be some chewed spots you can't
find. In my brain, those are areas with permanent damage.
The disease may have come from my immune system making a mistake
when I was sick with a virus, and it attacked my CNS instead.
There is a lot of research going on to find the cause and a
Some Questions You Might Have
I won't die from MS.
You can't catch MS from me.
There is no cure.
There are medicines. So far they all involve shots. Some
are daily, some are just once a week. None of them are fun.
Symptoms depend on what part of my CNS is affected
Some of the symptoms that come and go are poor balance,
poor coordination, slurred speech, weakness, tremors (like shaky
hands), numbness, extreme tiredness, sensitivity to heat, tingly
sensations, dizziness, memory problems, problems concentrating,
and loss of the ability to move some parts of my body. If my
optic nerve is affected, I may have blurry vision or even
When I am in remission, I may have no symptoms that are
visible. I won't look or act sick, but the MS is still there.
When I have a relapse, my immune system is attacking my
CNS. I may have new symptoms or myoid symptoms may get worse. My
doctor may give me additional medicine to reduce the damage.
This may be an IV, and I may miss school.
Friends and I
asked other teenagers with MS for help on this section)
Since the scars from MS can be anywhere in the CNS, this makes
different for each of us.
All of us have tiredness, even after a good nights sleep.
Sometimes this is not tiredness like I need a few more hours of
sleep; it's more like I need a week of sleep. Every cell of my
body is tired. For those of us that are affected by tiredness
all the time, there are special medicines we can take to keep us
Many of us have trouble concentrating and remembering things.
This is making school more difficult. We may be getting some
special accommodations at school, like sitting in the front row
or getting tested in a separate room.
Some of us have numbness and tingly-ness, and even loss of
feeling in parts of our body. This can be anywhere- face, hands,
feet, legs, and arms. This is not always on both sides of the
body, and may move around to different parts.
A few of us have vision problems in one or both eyes, or even
blindness. Glasses won't help because the problem is in the
Slurred speech is another problem. It is difficult when people
don't understand us,
and even worse when people think we are drunk.
Weakness makes physical activity difficult. Even walking or
carrying books can be hard at times.
How Can You Help Me
I just want to be a normal teenager. I am the same person I was
before, so don't treat me any differently. I may need your help
from time to time when my MS symptoms appear. Include me in
activities; I'll let you know if I can't do something.
When my symptoms cause coordination, balance, or weakness
problems, you can
If I have the drop-sees or weakness, you can carry things
If I'm having problems with balance take my arm and lead
me so I don't crash into things or fall down the stairs.
Keep me away from things where lack of coordination can cause me
Please don't pick on me, I can't help it.
My reaction time may be slower, so make sure I am ready
before you throw me something.
When I'm having problems with tiredness:
Find a place for me to rest.
Slow down so I don't get tired as quickly.
I will probably need to sleep at a sleep over party. Throw me in
a corner and try not to step on me.
be mad if I have to cancel or go home early. I’d much rather be
with you than sleeping.
we go somewhere involving a lot of walking, I may ask you to
push me in a rented wheelchair. That way I can keep my energy
for the fun stuff.
I'm having problems with concentration:
Remind me even if you told me before.
Help me keep track of what I have to do in a journal. In
class make sure I write assignments in the journal (I won't get
mad if you act like mom, it will save me the misery later).
Give me a hint.
Help me stay on track and not get distracted.
Help me stUdy. I will probably need to review things more
Let me borrow your notes from class. I may not
able 'to write asfast.
If I get over heated, my symptoms may be worse.
Park me in a cool place.
Help me get a cold drink.
I will go back to the way I was as soon as I cool down.
Remind the gym teacher that I'm not goofing off.
I have vision problems:
Let me take your arm and lead me.
When I am in a new place, tell me where things are.
me along to school events and give me a play by play.
I may use text books on tape, but can use helpers to read
other things to me.
When I have speech problems:
Repeat back what you think I said, if you aren't sure
If you still can't understand, ask me to write it down.
Remind others that I have a medical problem, not a
If I am out of school:
There are a few things that are dangerous for all teens, but
more so for those of us with MS. Drugs and alcohol can cause
more damage to a CNS that already has problems. The medications
used to treat MS cause birth defects, so an unplanned pregnancy
could be disastrous.
This booklet was written as a Girl Scout Silver Award and
High School graduation project by
After being diagnosed with multiple sclerosis, she had
a difficult time explaining the disease to her friends. She
hopes that this booklet will give teens a better
understanding if they have a friend with MS.
She would like to give a special thank you to
Roseanne, Taylor, Emily, Sophie, Lori, Kyle, and Kirk
for their feedback on how MS affects them. Also
thank you to the teens at
for their contributions.
Thanks also to
Kim Koch of the National Multiple
Sclerosis Society for facilitating the editing and
publication of this booklet.