In April 2002 something very strange started
happening to me, my vision started going funny and I began
to see double. One minute it was fine and the next there
was two of everything. This went on for several weeks until
one day I realized I had constant double vision. I went
to an optician who could not detect anything wrong and my
GP could not immediately see anything either, so referred
me to the eye department at the local hospital where there
was a waiting time of 4 months.
I tried to carry on at work pretending that
everything was ok despite giving up driving, reading and
watching TV because I could not focus. One night, a month
after the double vision started I became so disorientated
that my husband took me to A&E at the local hospital.
What I thought would result it a paracetamol and recommendations
of lots of rest resulted in a week of hospitalisation whilst
they tried to work out what was wrong with me.
The hospital decided I had a weak eye muscle
and “cured” the double vision by giving me a
special lens for my glasses and I was sent on my way. Every
3 months I attended the hospital for check ups and everything
seemed normal.
By 2005 I was the parent of a happy and demanding
2yr old boy. I still had bouts of double vision and each
time they came I would put the special lens on my glasses
and wait perhaps up to six months before my vision rectified
itself again. In the Autumn of 2005, however, the double
vision showed no signs of getting better. I then began to
notice that I could not run after my son like I used to
as my legs felt really weak, like they could not support
me, and I would get really breathless. I thought it was
because I was just unfit and “mummy of toddler syndrome”
was causing me to be tired. I could no longer mop my floor
without needing to sit down midway with my body feeling
like it could collapse under me and I could sleep for Scotland.
Then I had days when I could not walk very well. Everything
just felt floppy and I felt like a pretty useless mummy
as I could no longer do all the activities I used to be
able to with Cameron.
We had moved to West Lothian by this time
and I was referred to the eye department at St. Johns Hospital.
The eye doctor was brilliant and decided immediately that
I needed to see a neurologist as he was convinced there
was more to my problem than was first thought. The neurologist
decided that “mummy of toddler syndrome” did
not give you muscle weakness, double vision, breathlessness
and extreme fatigue and proceeded to book me in for all
manner of tests. Finally, 5 years after my first symptoms
I was given my diagnosis in June 2007. I have a condition
called Myasthenia Gravis.
Most people have heard of MS (Multiple Sclerosis)
or ME (also known as Chronic Fatigue Syndrome) but not many
people seem to have heard of MG, I certainly hadn’t
before my diagnosis.
MG is an autoimmune disease where, for an
unknown reason, the body attacks itself. In MG, the body
makes antibodies that destroy the body’s muscle receptors.
When this happens, muscle contractions are weak. Common
symptoms include: a drooping eyelid; blurred or double vision;
slurred speech; difficulty chewing and swallowing; weakness
in the arms and legs; chronic muscle fatigue and difficulty
breathing which can lead to a ‘myasthenic crisis’
where a patient needs hospitalization to help with breathing.
Activities that people take for granted - smiling, eating,
laughing, talking and using their limbs - can be extremely
difficult for a myasthenic.
MG can affect anybody including children and
it is possible for it to be a congenital condition. Neonatal
myasthenia also occurs in about 1 in 8 new born babies born
to myasthenic mothers who receive damaging antibodies across
the placenta which then affect the baby’s muscles.
These antibodies can also be passed through breast-milk.
Thankfully, since the babies do not make damaging antibodies
of their own they recover as those from their mother decline.
As Cameron is proof, MG rarely affects the
outcome of pregnancy though symptoms occasionally get worse
during pregnancy but more often do so for a few months after
giving birth. With hindsight, this perhaps explains why
I noticed a marked decrease in my vision at this time and
seemed to be more fatigued than many of the new mothers
I met at this time.
Thankfully, the treatment available to MG
sufferers means that most patients can lead an active normal
life. I am now on medication that has done wonders for my
double vision and my muscles, though I still have to plan
my day as I tire very easily. My neurologist is also arranging
for me to have further tests and I now know what to do should
my symptoms worsen. Cameron understands that I have to take
my tablets every 4 hrs and he is very good at asking me
if I have had my medicine, but he still can’t fully
understand why I try to get him to play quietly some afternoons
so I can sit down or why I can’t charge about the
garden like he and his daddy can.
I am still coming to terms with my diagnosis
but I am grateful that after 5 years I now have an explanation
as to why it felt like my body was failing me. I can only
look back on how I have felt since 2002 and it feels like
I can now complete my jigsaw with all the missing pieces.
So many things now “make sense” when I think
about how I have been feeling especially with how difficult
I have found it at times looking after Cameron.
**************************************
Below is an article by Louise Krupski who is
also a myasthenic and this is her experience of giving birth
with the condition. She came to realise that doctors and
patients need to work together to achieve best care and
that all women have the right to request the birth experience
that they really want.
When I was twenty-one I was diagnosed as having
ocular Myasthenia Gravis. I have suffered several relapses
but thankfully with adjustment of my drugs I have always
recovered quickly. However the worst relapse I have had
came as a result of discussing issues connected with pregnancy
with my consultant two to three years ago.
In a regular check up I mentioned the fact
that I would at some point like to have children. He seemed
to think this meant that I was going to rush out to Baby
Gap and buy six baby-grows in preparation for the imminent
birth. The up-shot was that he took me off azathioprine
(one of my drugs) as he felt that it was a very dangerous
drug to be taking in pregnancy. The fact that I had no intention
of conceiving for at least another two years did not seem
to register.
The relapse was very frightening as I started
to suffer symptoms which I had not experienced before. I
am a secondary English teacher which means I have to do
a lot of reading aloud in class. I found that after a few
minutes my speech became distorted and I had to rest. What
made it worse was that my consultant kept telling me that
these were not symptoms of escalating general Myasthenia
but that the sensations I was feeling in my face were connected
with my weakening eye muscles. I knew that this sounded
wrong. I really believed that if I didn't sort something
out quickly my condition would continue to deteriorate.
I was already off school, a situation I did not want, and
for the first time since I was diagnosed I was frightened
by the disease which I had always been able to manage.
I succeeded in getting myself a second opinion
from Professor Newsom Davis a renown MG specialist. Within
ten minutes he had diagnosed that I indeed had general Myasthenia
and that he felt that I should immediately re-start taking
azathioprine. He showed me his wonderful collection of photographs
of bouncy beautiful babies all conceived and delivered by
women on steroids and azathioprine. He also took the time
to listen to me telling him that I was not going to get
pregnant for a while anyway. Roughly two years later I fell
pregnant with Isabella.
As soon as I knew, I booked an appointment
with my consultant (a different one) to discuss my pregnancy.
The day I went was very hot and I was just beginning to
suffer morning sickness. In addition I am notoriously phobic
about anything attached with blood, and so hospitals do
scare me somewhat. During the visit I asked my consultant
to tell me what the risks were associated with the drugs
I was taking during pregnancy and also explain the problems
I may have during the birth and the baby's health afterwards.
I'm afraid my consultant did not have particularly
advanced counselling skills and he reeled off a whole list
of possible disasters which could befall my baby and me.
For instance he pointed out the possibility of some kind
of deformity in the baby, and the fact that if my strength
did not hold I may have to have an emergency caesarean section.
As he was not looking at me he did not see me start to shake
and fidget as the nausea took over . I asked him if I could
lie down, and as I did so I passed out. I woke up quite
hysterical and it took me a long time to calm down. I was
convinced that I had done a terrible thing in getting pregnant
and that I was about to bring a poor disabled child into
the world. I felt that this was all my fault and that I
had committed a disgustingly selfish act in allowing myself
to get pregnant.
Later I got angry that I had been treated
in the way I did. Consultants need to be sensitive to their
patients, not just in their medical treatment but in the
way they talk to us and prepare us for what can happen..
I knew, once I had calmed down, that I wasn't
getting the full story, but I was also confused by this
time, I had three different consultants all telling me different
things, who should I trust? I decided to do my own research
and contacted a pharmaceutical association. They sent me
details of research done on the drugs I was taking during
pregnancy. Without going into great depth about what I discovered
I became much more confident that Professor Newsom Davis
was the guy to trust. At the same time I had a very positive
consultation with my obstetrician, who was very reassuring
and promised close supervision throughout my pregnancy and
birth.
My pregnancy was absolutely fine. I had all
the usual problems, back pain, heart burn, nausea etc. but
somehow these were welcome as they were so normal. The birth
was fantastic, life can never be the same after something
so beautiful. However the Myasthenia did intrude at one
point, or at least for a doctor it did.
I had a very long and slow first stage of
labour. After twenty-four hours of contractions I decided
to go into Kings. When I was examined I was about five centimetres
dilated and so still had a way to go. The young doctor on
duty felt that due to my Myasthenia and the length of my
labour I should consider taking some sintocinon, a hormone
which speeds up contractions. I did not want this as I had
read, and spoken to women who had told me, that sometimes
medical intervention at birth can lead to more and more
intervention and so less and less control of the birth by
the mother. Without being carelessly bravado I had decided
in advance that I wanted to have my baby with the minimum
of medical intervention and pain relief. I therefore told
the doctor to leave and come back at the next examination,
and if I had not dilated sufficiently to intervene. With
the support of my midwife he agreed, and low and behold
Isabella appeared unscathed and beautiful without his help.
I suppose that what I have been trying to
illustrate by writing my story is that at the end of the
day anyone's medical care has to be a partnership between
the patient and the medical profession. It is not acceptable
for doctors to treat their patients as if they are bodies
to manipulate at will forgetting that each person they treat
will suffer in a completely unique way. They should always
be sensitive to the needs of their individual patients.
But it is also true that we as patients have a responsibility
to ourselves and our doctors to keep well informed of our
illness, and to be assertive about what we want for ourselves.
Only by being positive and active about our treatment can
we either avoid or tackle the kinds of problems I faced
and still face today.
Article reproduced by kind permission of Louise
Krupski and the Myasthenia Gravis Association.
FOR MORE INFORMATION ABOUT MYASTHENIA GRAVIS
AND PATIENT / FAMILY SUPPORT PLEASE CONTACT, visit their
website at http://www.mgauk.org/
