My MS
Story
Getting my MRI
results and hearing the words Multiple Sclerosis mentioned will
forever be engraved in my brain. I will never forget that day or the
months following. MS has forever changed my life. I am a mother of
two children and I am now living with Relapsing Remitting Multiple
Sclerosis. Although I was just recently diagnosed I have probably had
it for some time.
I went to my doctor because I was
having an abnormal headache that was lasting weeks and we both
decided that I needed to have a brain scan. We decided on an MRI to
make sure there were no masses or tumors. The funny thing is that I
wasn’t even worried about that. Now I wish it would have just been
something that could have been removed. A couple of days after the
MRI I got a call saying she wanted to see me and go over the results.
I knew this could not be good, but had no idea what to expect. She
gave me the results and said she was still not sure if MS was what
was going on with me. She decided to send me to a neurologist so he
could make the final decision. From this point forward I was in a
daze. Probably MS fog as some may call it. I had a feeling for quite
some time that there was something wrong. I thought that it would be
something fixable. I had no idea that I would be living with an
incurable chronic illness.
I met with the neurologist within a
couple of weeks after getting the news and he agreed with the MRI
results. He said I had multiple lesions and they all looked like MS.
We talked about treatments and he assured me it was not a death
sentence. I left that appointment feeling completely helpless and
decided it was time to tell my parents. Boy was that hard! My parents
had already dealt with my sister having an auto-immune disorder. They
went through so much with her illness and it tore them apart. My
sister is well now because she had a kidney transplant that was
donated by my older brother. I had already told my sister and we
thought it best to tell my dad first. His mom had MS and so we
already knew some about it. I am the baby of the family and I am sure
we all thought our family was clear of the bad luck. My dad met me at
my daughter’s volleyball game and I told him the bad news. He was
quiet and just looked really upset. He is always quiet so I was
expecting that, but he did tell me that we would get through this as
a family. When I got home I waited for my sister and dad to come
over. We all knew we had to be there for my mom because she was going
to flip. We all sat down and I told her the news. She immediately
started crying and blaming herself. She could not understand why yet
another one of her children had to go through this. I told her that I
would be fine and her response was, “Your fine now, but what about
later on?” It then that it hit me that I did not know how my future
was going to pan out.
I started to think about my kids and
their future. How was I going to take care of them if I was in a
wheelchair or couldn’t leave the house? What if one of them gets
MS? What if I can never have kids again because I won’t be able to
take care of a baby? All of these things scared me. I decided to tell
the kids one night, as I was putting them to bed, that I had MS. My
son started crying and asked if I was going to die. My daughter was
quiet, but I could tell she had questions. I didn’t really know at
the time how to explain it to them. At this point in time, we had no
idea how our lives were going to change, or how I was going to change
as a mother.
My neurologist wanted to do a Lumbar
Puncture to verify the MS, but I already knew what the answer was.
Although I was hoping it would come back negative, deep down inside I
was sure. I had the puncture about a month after the initial MRI and
it was horrible. I ended up having a spinal headache and could not
get out of bed without being in excruciating pain. Two days after the
puncture I had to go back to the hospital and have a blood patch so
that my spinal fluid would stop leaking out. I was out of work for a
few days. I kept calling my neurologist to see if he received the
results already, and then one morning at work I got the call I was
dreading. He told me my results came back and it was 100% MS. He said
I have the most common form and I should start thinking about
treatment. He told me it is unclear whether or not it is an
autoimmune disease, but I should treat it as one. I started crying on
the phone with him and had a really rough day. I called my mom to
tell her and she told the rest of my family. I was on an emotional
rollercoaster that was going to be never ending.
I started researching, reading books
and searching for other people with MS to connect with. I also
started looking for a local support group and found one through NMSS.
I called the facilitator who was in the hospital at the time, so I
was told to call back in a couple of weeks. When I finally got in
contact with her she gave me the info about the group. She also gave
me some suggestions on diet and other supplements. She said I should
start thinking about a disease modifying treatment as soon as
possible. I started feeling fatigued and sleepy all the time. My mind
was not working the same and I could feel things changing. I have
daily headaches, pain, numbness, dizziness, and imbalance just to
name a few. I don’t even remember how being well feels. I was a
medical assistant for 6 years before my diagnosis and had to stop
working because my health was getting in the way of office flow and
productivity. I also had to decide whether working or taking care of
my family was more important to me. My boyfriend was very supportive
with this decision even though we would be losing income. I chose my
family and am now a stay at home mom. My life is now waking up
getting my kids ready for school making my boyfriend lunch then
getting back in bed and waiting for them to come home from school and
work.
I had already
talked to my neurologist about treatments at my first visit. The ones
we talked about were all shots. I hated shots. I decided to start a
once daily injection. I was having really bad site reactions and was
so anxious with every shot, I absolutely hated it. I talked to my
neurologist about a once a month IV infusion and decided I wanted to
try it. I heard that there are little side effects and it could
reverse damage and help with daily symptoms. I was very excited and
wanted it now. We ran it through my insurance and realized it was
going to be too expensive for me. The little ounce of hope I had in
feeling better was once again taken away until I met a young lady at
an MS conference. We talked about treatment and she said she was
doing the IV infusion and loved it she had wonderful results and said
I should not give up. She suggested I find out about financial
programs and call the pharmaceutical company to see if they can help
with the cost. I talked to the hospital where I would be getting the
infusion treatments at and found out that I was approved for a
financial assistance program through them, meaning I would pay
nothing for my treatments for one year. My hope has been restored. I
hope and pray that this medication will be my miracle and lead me on
a new path on this MS road.
There are so many
inspirational people with MS out in the world and I want to be one of
them. I have taken over the support group as group facilitator for a
few months now and want to do so much more for people like me with
MS. This short excerpt from my new life with MS will hopefully give
others hope. Don’t ever lose faith. Where there is a will, there is
a way!
