It was early September of last year. We had been in our new
house for a week. I was bending over to transplant our petunias into the dirt
in front of our house. As I stood up, I felt dizzy. It didn’t faze me. I
frequently get dizzy from standing up too quickly. It was hot outside. I sat
down on the steps to the house to take a break. I knew it would pass. But for
the rest of the day I was almost constantly dizzy. Details are a little fuzzy
for me, but I remember being completely wiped out for an entire week sometime
shortly after our move. It was like I had been strapped to “the machine” on the
Princess Bride, and the life had been sucked out of me. I had no other symptoms
other than being utterly exhausted and dizzy. I knew I was overly-exhausted
from the move. I assumed that I had just overdone it, and my body was strongly
protesting. For a whole week, I stayed mostly in bed, getting up only to feed
the kids when necessary. Shortly after that is when I started to notice the
other symptoms. My hand would not do what I would tell it to do. Simple tasks
like washing the dishes, stirring ingredients, texting, typing, washing my hair
became so painstakingly difficult. It wasn’t constant. It would come and go,
but it seemed to happen more often than not. The worst was writing. It’s almost
like my hand would just freeze and I would have to use every bit of effort to
etch out each letter. The result was often illegible to the point that I could
not even recognize what I wrote. This would cause a lot of anxiety – especially
if I was at the check-out counter and I had to sign my name. I would stand
there for what seemed like an eternity as I feebly attempted to make some sort
of a semblance of a signature on the keypad. Anxiety would inevitably rise as I
felt like the entire line behind me was staring in impatient wonder of why it
was taking me so long. Then came the leg issues. It started out of nowhere one
day when I got out of my car to walk into Walmart. It’s as if my right leg
forgot how to walk. I had to consciously think about picking up and moving my
leg for every step. My left leg was not affected at all. I can only imagine
what I must have looked like as I hobbled across the parking lot and into the
store. It was such a relief to finally be done with my shopping and to be able
to sit back in the car again. The leg thing, just like the hand thing, seemed
to come and go. I had no way of knowing when it would hit or for how long. I
was practicing my songs to play in church one week, and I kept losing control
over my right hand, and my head would start to spin. Sadly, I knew I would have
to back out of playing that weekend. Some other symptoms I experienced were
numbness and tingling in my right arm and hand, brain fog, confusion, deep
extended periods of sleep each night, slurred speech, and almost out-of-body
experiences at times.
All of these symptoms puzzled me. Because they could not be
easily explained, and seemed to come and go, there were definitely times when I
wondered if maybe my brain was playing tricks on me, and I was just imagining
it all. I tried doing my own Google searches to see if I could come up with
anything that would explain these mystifying symptoms. Quite a few things did
come up. I had no idea which, if any, were what I was experiencing. I went to
see my naturopath for a follow-up on thyroid testing we had done. He agreed
that the symptoms seemed odd. But at the time I seemed to be doing better. He
thought perhaps I had been suffering from an inner ear infection.
At the beginning of November, I was feeling somewhat better
and decided I would make a big Thanksgiving dinner with all of our favorite
recipes. But as Thanksgiving approached, I knew I did not have the energy to do
all of the shopping and cooking and cleaning for a big Thanksgiving dinner. We
opted to eat out that day. I was simply exhausted all the time. I am not sure
if the constant dizziness caused the exhaustion or if the exhaustion was part
of the symptoms.
At that time, I was getting to know a lady, who has since
become a dear friend. We started hanging out, and I was surprised when she told
me she has MS. I didn’t know anyone with MS, but it was one of the things that
came up in my Internet searches. I asked her about her experiences. She asked
about my symptoms and said it was definitely worth checking into. Her husband,
who is a PA, expressed that my symptoms sounded as though they were related to
the brain and encouraged me to get an MRI. Up until then, I had mostly brushed
my symptoms off, thinking (hoping) they would go away eventually. But when he
mentioned the MRI it made sense to me, so I made an appointment with a doctor.
The doctor immediately mentioned MS, and ordered the MRI and referred me to a
neurologist.
At the same time, I also went to a chiropractor to see if there
was any way something in my spine could be causing these symptoms. The
chiropractor looked at my x-ray and felt sure that my symptoms were a result of
a bulging disc in my neck. I was so relieved! He assured me that after 4 months
of treatment, and several thousand dollars, I should feel better. I was so
happy to think that my symptoms were being caused by something completely
fixable and would soon go away. I even asked him if I should still get the MRI
(which looking back, I feel kind of stupid for having asked that). Thankfully
he said I should so that the doctors would see the difference that chiropractic
care can make.
So I got the MRI with the high hopes that they would find
nothing wrong with my brain. A week or 2 later I got the call from my doctor.
They had found lesions on my brain and were suspecting MS. I was crushed. I knew that MS is incurable. My
immediate thoughts were that I would have these symptoms for the rest of my life.
The thought of never being able to really play the piano again or of taking
twice as long to do all the simple daily tasks I do or of constantly being
dizzy for the rest of my life was overwhelming. I went into my dark bedroom,
shut the door, sat on the floor next to my bed and just cried. I had a good,
hard cry. Then I picked up a bookmark that Lili had made me off the floor. It
was a list of the many names of God. At the top was a verse that seemed to jump
out at me: “And those who know your name put their trust in you, for you, O
LORD, have not forsaken those who seek you.” – Ps. 9:10. A wave of peace washed
over me. I knew whatever happened, I was going to be OK.
Shortly thereafter, I went in for my follow-up with my
neurologist. He looked at the MRI, and confirmed that they looked like MS
lesions, but the MRI was not conclusive enough to diagnose me with MS. He
ordered a spinal tap and a ton of blood tests. The spinal tap was definitely
not on my list of greatest experiences ever. It was horrible really. I was so
nauseated I thought I would completely ruin all the doctor’s strict orders to
remain perfectly still. He bent the first needle, so just when I thought it
would all be over, he had to take that needle out and start the whole process
all over again. Because my neurologist had ordered so many tests, the whole
procedure lasted even longer than usual.
The morning of my follow-up appointment with my neurologist,
I woke up with so much anxiety and fear of the unknown. Every cell of my being
craved desperately for something I could hold on to. I knew I needed a verse to
get me through the day. I decided to continue with my daily Bible reading plan
for the day. Would you know that the reading for that very day was Psalm 9, and
that very same verse that had been such an encouragement to me before was the
verse I read that morning? “And those who know your name put their trust in
you, for you, O LORD, have not forsaken those who seek you.” I shed a few more
tears that morning, but that time they were tears of one who knows she is
deeply loved by her Father. He is so good! My follow-up with my neurologist was
par for the course I had been on. The spinal tap, as well as all the other
tests, came back normal. I think my neurologist was not sure what to do with me
at that point, so he referred me to an MS specialist (just happened to be the
same doctor that my friend with MS goes to).
In the meantime, I had pursued specialized testing for
Lyme’s disease, per the recommendations of some friends. I had read, and also
heard from friends that Lyme’s can mimic MS. Loren and I went in for the
results of that test. They came back negative for active Lyme’s and
inconclusive for chronic Lyme’s. There was another test I could do to
specifically check for chronic Lyme’s. Loren and I decided to wait until after
my appointment with the MS specialist the following day to decide whether or
not to get that $1000 test. (I did ask the MS specialist about the possibility
of Lyme’s that next day. He explained that Lymes’ lesions are different than
the type of lesions I have. He also said it would be a moot point getting that
test as it would only check for chronic Lyme’s. Since at that point, my
symptoms were mostly gone, it was fairly evident that I do not have chronic
Lyme’s.)
The next day I went to my appointment with the MS
specialist. His conclusion was that I have what’s called Clinically Isolated
Syndrome. He explained that in order to have an MS diagnosis, you have to have
had at least 2 attacks. It appeared that I had only had 1. However, with the
CIS diagnosis and the lesions on my brain, he explained that I am 60-80% likely
to have another attack within the next few years, thus giving me an MS
diagnosis. For those of you who are unfamiliar with what MS (Multiple
Sclerosis) is, it is when the immune system attacks the myelin sheaths
(protective coverings of nerve cells) in the brain and spinal cord. His
recommendation is to begin MS medication as soon as possible to reduce the
likelihood of another attack. We have chosen a medical treatment – one that I
am not thrilled with because it involves giving myself a shot 3 times a week –
but also one that has very minimal risks and side effects, especially compared
with the other MS drugs. I will go in for another MRI after being on the medication for 3 months to make sure that the lesions are not progressing.
Thankfully, I have not had any symptoms for the last few
weeks. They lasted for about 6 months, gradually occurring less and less until
they went away altogether. I cannot tell you how happy I am that I can write in
my normal penmanship again and sit down to play the piano again. Funny how such
simple things such as walking and brushing your teeth can be so easily taken for granted. I have a
greater appreciation for my health than ever before and feel that I can
empathize more with those who battle with debilitating illness every day.
I am looking into diet changes and other natural methods of
making my odds against having another attack as good as possible. I am so
thankful for the love and support I have received during this journey. God has
been and always is faithful. I am amazed at how He knows - even better than we
do ourselves – of what we need even before we need it: just the right verse, a
friend who has similar experiences, a song on the radio, friends who strongly
encouraged me to go to the doctor when I was putting it off, offers from
friends to watch the kids so I could go to appointments even before I asked, texts
and messages from friends who have let me know they are praying for me. He is
so good!
