Umm Anonymous is a Muslim mother of two. In early 2012, after a mysterious and rapid decline of her physical abilities, she
was diagnosed with Multiple Sclerosis (MS), a chronic autoimmune disease. Alhamdulilah, she is now being
treated for MS and is in remission. Portions of this interview have been
altered to preserve the sister’s privacy.
What happened the day
you were admitted to the hospital? Where did all of this start?
The actual symptoms started way before I was admitted to the
hospital.
In hindsight, I had an episode of MS which went undiagnosed. There
was a three to five week period where I lost the ability to read with my right
eye and I had a 15-day migraine. It wasn't a migraine just when I woke up or
just when I was tired or just when I was hungry; it was all day, every day,
with no abatement for 15 days. I had jaw pain, I had ear pain; the entire right
side of my head was in pain: head, neck, and shoulder with the loss of my ability
to read. I could see who I was talking to, I could see different objects in the
room, I could drive, but if I put a page within my line of vision I couldn't
see the words with my right eye. It would just be a white sheet.
I went to eight doctors to see what the problem was. Literally,
eight doctors and not a single one of them said that it might be MS.
I had an MRI which came back inconclusive. There was some
spot of abnormality but it was too small for them to draw any conclusions. I
was told to come back in three months to have a contrast MRI done but by then I
felt fine so I didn't go back. I was given some medication for the migraines
which didn't work because the medication wasn't to treat migraines related to
MS. But at that time I didn't know that I had MS and my doctors didn't either.
When I started to get sick again I was preparing for a 65
mile bike race. My workouts would be about 2.5 hours long, four to six days per
week, and I could go to 2.5 hours without feeling tired. At the beginning of the month, I started to feel
fatigued at about two hours, and then later that month 90 minutes became
difficult for me. And then an hour and 15 minutes was getting difficult. I
thought maybe it was because I wasn't eating right, I thought maybe I had put
on some weight. I tried making modifications but it didn't make a difference. My stamina was still declining and I couldn't figure out why.
One day I had a very intense run and it felt great. But
later that day I started feeling a tingling at the edge of my left foot and
thought maybe I was pounding my feet too hard during the run. It didn't make
sense to me but I figured it would go away in a day or two.
Prior to that, I noticed that if I put pressure on my right
thigh I would feel a really warm sensation. It wasn't burning, but it felt like
someone took a heating pad and just covered that part of my body. I didn't
think anything of it and it was really subtle; I almost barely noticed it. Then
the thing happened with my foot. Within a few days after that, the sensation
covered my entire body with the exception of my head, neck, and left arm and
shoulder. It was this pins and needles feeling throughout my entire body.
Sitting was irritating, standing was irritating, walking was irritating. If my
clothes rubbed against my skin it felt like someone was scratching me with hot,
broken glass. My skin just hurt.
Knowing what I know now about MS, this is all within the
range of what’s normal. And the range of what’s normal for someone with MS is
really, really broad because it’s a neurological disease. Depending on what
part of your body is being attacked by your immune system, that’s going to
bring about certain symptoms that you might have but I might not have even
though we both have the same disease.
I went to the emergency room the next day because my primary
care doctor had a death in his family so he wasn't working. The emergency room
doctor was unhelpful and kind of took my symptoms as a joke. He gave me an
antibiotic and a prescription strength motrin. He also encouraged me to go see
the neurologist because he was poking me and asking if it hurt and I was
practically jumping off the table. He couldn't believe that his poking me was
causing so much pain. He figured I might have a really bad case of the flu. But
he gave me an antibiotic and the flu is a virus and viruses don’t respond to
antibiotics because viruses are not biotic but, whatever.
So I went home feeling frustrated, feeling disrespected,
feeling like I had wasted my day because I know that whatever he thought it
was, he was way off. He diagnosed me with something called Neuralgia. It’s just
a fancy name for my symptoms. It’s not a diagnosis; it’s more of a description.
It’s just an adjective.
I saw the neurologist and she gave me a very thorough
physical exam. She had me squeeze her fingers, walk on my toes and walk on
my heels, hop on one foot and walk in a straight line. She was also poking
at me and she checked my reflexes. All of my reflexes were fine. So that
physical went well. She couldn't figure out why I was feeling so weird. She put
me on a medication called Elavil which is an antidepressant, but she was
prescribing it for an off-label use because they found that it also works for
neurological symptoms.
I went home and started taking the Elavil because I was in
so much pain. At this point all of my skin hurt, except for the parts that I
mentioned, and now my feet were painfully cold. The pain I felt in my feet was
like I decided to go shovel the snow after a blizzard barefoot and with no
pants. It was painfully cold. I was wearing these thick fur-lined boots
everywhere with ski socks. And my feet still felt cold. In addition to this, if
anybody touched me or brushed against me my skin would feel like I was being
scalded with an iron. But internally I felt cold all the time. I had to wear
layers upon layers of clothes.
It was a Friday afternoon and I checked my insurance
provider directory and I just started calling any doctor that would take my
insurance. "Can you take me today? No. Okay." "Can you take me today? No. okay." I wanted to see someone that night because I wasn't sure if I would get any
treatment over the weekend and I didn't want to go back to the hospital and run
into that other doctor.
Now, were you were
calling another neurologist or just any doctor?
I was calling ANY doctor because I was desperate and I was
in so much pain. In addition, I was feeling weak. By this point it had been a
week since I stopped exercising because I just couldn't do it anymore.
I was
still working, but it was very difficult for me
to get around the building. Going up just one flight of stairs was like I was
carrying a load of rocks. And I’m a physically fit woman. I could hop up the
stairs on one leg and not be breathing heavy by the time I get to the top
floor. But just in the course of two
weeks my body kept getting weaker and weaker and weaker. And that was what really
concerned me because it’s not like I live a life that’s sedentary. It’s not
like I’m majorly overweight. I’m a pretty healthy person, a very physically fit
person, and to see my fitness level drop so quickly and so dramatically in such
a short period of time was really scary for me.
So I went to another doctor and I started telling him my
symptoms. I was prepared for this appointment. I knew the names of my drugs; I
knew what they were to be used for. I kept a journal of all the things that I
was feeling so we could try to piece together what the problem was. I wrote
down everything. When I went in, he didn't seem totally interested in
listening to these things and I told him, "No. You need to listen to this. I
don’t know what’s wrong but I know that I’m very sick."
Another issue that I was having trouble with at this point
was urinary incontinence. I didn't know whether it was related to the other
symptoms I was feeling but in that time I stopped drinking tea. I also drastically
reduced the amount of water I was drinking. I would avoid liquids all together.
Fortunately I worked close to home, so if I had a free period I
would run home to change my clothes and take a shower because I would
have najasa on me and wouldn't be able to pray.
I told the doctor about this and he thought I had
something called Rhabdomyolysis which is kidney failure due to excessive
physical exertion. High performance athletes are more likely than other people
to get it. But one of the hallmark signs is that your urine is going to be a
very brown color. But my urine wasn't brown. And I hadn't exercised in more
than a week at that point so that definitely wasn't it. But he evaluated me for
that and took my blood work and urine and my results were fine.
I went back to my neurologist a second time who had me go
through the physical exam again. It was the same exact physical as before. Walk
on your toes, walk on your heels, walk on one foot, squeeze my fingers, lift
your toes from the ankle, and this time I couldn't do any of the things she was
asking me to do.
The first time I saw her, she essentially told me that it was
all in my head. “Maybe you’re too stressed, maybe you need to sleep more, maybe
you should take a break.” The second time I saw her, which was only in the span
of nine or 10 days in between, I could hear the fear, doubt and confusion in her
voice and I saw these emotions on her face. In fact, when I walked in from the
waiting room to the examination room I was walking with a very heavy limp. My
ability to walk at this point was rapidly declining. I would lead with my right
leg because it was my stronger leg and I would just drag my left leg behind me. So when
she saw me walking she said, “What happened to you?!” Not ‘hello’ or ‘how are
you feeling?’ But, “What happened to you?!” And I said, “I don’t know doctor;
I’m sick.”
Then she wrote a prescription for an MRI of my entire spine, thoracic, cervical and lumbar spine. She also wrote a prescription for me to
get an ultrasound on the veins in my legs because she couldn't explain why my legs
and feet felt so cold to the touch. She thought maybe I was having some sort of
vascular problem. The ultrasound was normal. Because she looked so confused and
just in over her head, I decided to see a different doctor.
My family had been after me at this point to see a doctor of
sports medicine. We had the interview of my symptoms. By this point I was
making a mess on myself in the bathroom. To walk, I actually had to pick up my
leg to move it to where I needed it to be. Getting in and out of the car I’d
have to do the same. He did an x-ray of my spinal column and 15 minutes later
said that bones were fine. Then he started the physical exam. I couldn't lift my
leg. I couldn't point or flex my toes. I couldn't resist him when he pushed
down on my leg. He just folded his arms and said, “You really can’t do it?” And
I said, “No, I can’t.” Then he asked me did I have a car accident? Did I fall
down a flight of stairs? Was I hit with or by anything or anyone? And I said,
“No.” I didn't have any physical trauma, it just happened. And I shared all of
the information I had for the past month of symptoms and he listened to all of
it.
He told me to go the imaging center that day to get an MRI
but I couldn't get the appointment because I didn't have approval from my
insurance. He called the supervisor of the imaging center himself on her cell
phone and begged and begged and threatened on my behalf. This was the first
time I had ever seen this doctor, so for him to stick his neck out in this way
was amazing. The final answer from the imaging facility was no.
He wrote me a prescription for the emergency room and said
“they have to take you.” He wrote on the prescription to check for Cauda Equina
Syndrome. Cauda Equina means 'horse's tail'. At the end of the spinal cord there
is this tail that hangs, and in the case of an accident you could get one of
the pieces of the tail caught in between your bones which is a medical
emergency that they’ll want to treat within 24-48 hours. I had already been
like this for a month. But he knew that writing that on the prescription was
absolutely necessary to get me the MRI. And he wrote his cell phone number on
the prescription and said the radiologist had to look at the MRI that same day
and call him back no matter what time it was.
So I went to the hospital. I thought that I would be out
within a couple of hours. They gave me the MRI for my spine and after giving me
their own physical they added an MRI of my brain. They brought me back to the
emergency room and I’m just sitting there waiting. After some time, I called the nurse and
said “I’m going to get a ticket so, what’s up? Can I talk to the doctor? Should
I go put money in the meter?” She said, “No. We’re keeping you.” And I said, “What?
Why?” And she said, “I’ll have the doctor speak with you.”
The doctor came in, said she looked at the MRI, and then said,
“You have Multiple Sclerosis.”
