The weakness hasn’t always been a big problem for me but as I get older the
weakness seems to get more severe.
I am fifteen years old and I am studying my first year of TEE in year eleven.
My school is three stories high and I am finding it hard to get up and
down the stairs in between periods. This
has sometimes led to me being in trouble for being late to class.
I have missed many days off school because of this; recently I missed a
week because I felt too weak to get out of bed. Last year I often (once a month) went to the sick bay when
feeling too sick to work. I was
almost always sent home when all I really needed was something to eat, like a
sandwich, and a bit of rest. This
year when this happens I tend to just sit in class and stop work for a while
until I’m feeling better. There
have been times when my friends have had to carry me up the stairs because I
have felt too weak to climb the stairs myself.
One of my subjects at school is dance. I find that
doing dance helps to keep me fit and active. Sometimes I feel sick before
a dance class and if I participate, after a while the weakness seems to go away.
Case Study Three
When I was twenty I fractured my femur. It took a long time
to recover muscle strength. Orthopaedic Surgeon and physiotherapists accused me
of being lazy. I felt I was working as hard as I could to regain muscle strength
and the incident reminded me of when I had fractured a bone in my ankle at the
age of five and it had taken a long time to get the strength back in my leg
again and walk without the aid of crutches.
After I broke my leg for the second time I started to have short episodes of
paralysis in my hands and feet in the cold weather. I went to the doctor and he
told me I had Raynaud’s Syndrome. I knew that he was wrong because the
circulation in my hands and feet had always been good but the visit did reassure
me.
At the age of thirty-two I started to have paralysis in my hands and feet again
and weakness in my thighs. It took another seven years and many diagnostic tests
to get a diagnosis of Periodic Paralysis. During one admission to Emergency
Department I was given intravenous potassium and the paralysis became more
severe. Very quickly I was unable to talk and I found breathing difficult. My
husband demanded that the IV potassium be stopped and changed to glucose.
I have tried Diamox (acetazolamide) and Chlotride (hydrochlorothiazide) with
only short-term success. Now I use Daranide (dichlorphenamide) and Mexitil (mexiletine).
Before treatment I was having several attacks a day lasting from 20 minutes to 2
hours and often woke paralysed. Now I usually only have one or two short attacks
in the evening. I recover from the attacks by eating lollies or drinking a sweet
drink. Attacks are caused by sudden loud noise, high potassium foods such as
potatoes and many fruit, going without food, rest after exercise and changes in
weather. My current Neurologist has told me that I most likely have Hyperkalemic
Periodic Paralysis and Paramyotonia Congenita.
Case Study Four
– Hypokalaemic Periodic Paralysis
My first episode of paralysis happened at the age of 25. It came on over
minutes. It began in the arms and legs, then spread to involve my neck and back
so that I could not sit up. It then proceeded to my face so that I had
difficulty opening my eyes and even speaking. Soon after it involved my
respiratory muscles. I found it difficult to breath and was rushed to hospital
by ambulance.
One year later I had further episodes of paralysis. They came on in the same
way, lasted for about four hours, and then lifted in the reverse sequence of
events to how they came on. Initially they occurred every few days, but then
occurred a few times each day. In between episodes I was left very weak.
Notable triggers for episodes of paralysis for me were: Exercise, Emotional
stress, Sodium (salt), Orange juice, and Potatoes.
I was diagnosed with Hypokalaemic Periodic Paralysis. My management involved
dietary changes, lifestyle changes and medications (Potassium and Magnesium
supplements, Dichlorphenamide and Spirinolactone). I learned a lot and found
much support from others with the condition through support groups such as the
Periodic Paralysis Society of Australia.
I prayed and asked Jesus to heal me. He did. I have not had any problems since.
Case
Study Five
I
am a 62 year old male with Hypokalemic Periodic Paralysis. Diagnosis was when I
was 12 years old, soon after onset by Doctor Gordon Hislop. I would have severe
total attacks of paralysis every night which I could control with Potassium.
At
age 27 I started taking dichlorphenamide (Daranide)100 mg with dramatic
improvement in muscle strength and abolition of paralysis attacks. I am still on
this medication 35 years later with no side effects.
From
mid 40's I have experienced slow and progressive degeneration of lower limb
muscles which may have been slightly helped by Clenbuterol 0.02 mg twice daily.
Adverse
reaction to medication was experienced from Celestone Chonodose 1 ml with intra-articular
injection. This resulted in severe a attack of paralysis that was unresponsive
to potassium and caused partial respiratory muscle failure.
Case Study Six - Myotonia Congenita
(MC)
M.C. apparently comes in two main forms which impairs the
operation of muscles. However, it seems to affect people in different ways. In
my case, I can use my muscles, say in running with no ill affects but as soon as
I try to jump a small obstacle my leg muscles lock up and I fall down. If I grip
something tightly, my hands lock up and it takes a while for the muscles to
relax. Its painful, embarrassing and sometimes dangerous. Dangerous if you
suddenly try to get out of harms way and you have a lock up.
As a child of Primary School age, I could run like the
wind, climb large trees and swim very well. I lead a pretty wild sort of life
both in and out of school. It wasn't until High School, when I was told by
teachers with my energy and speed I could represent the school in athletics. I
tried out in some running events but as I tried to power off the starting
blocks, I fell down 4 out of 5 times. The teachers and doctors concluded that
the problem was either lack of muscle tone (fitness), growing pains or pretence
(trying to get out of performing). Then one time I volunteered to chop wood and
maintain the fires at a church camp in York (WA). It was cold and damp most of
the the time so I had to cut lots of wood. After using the axe for a little
while, I found I could not let go of the handle and my arms ached like I had
severe cramps. Fortunately, there was a doctor at this camp who referred me to a
Neurologist. After enduring the pain of an E.M.G. diagnosed the above muscle
disease. Dylantin was prescribed and I have managed with this and a moderate
lifestyle. The one positive aspect of this problem I discovered was when I
grabbed one of my children to discipline them, they could not get away because I
could not let go. Sometimes they would say, not the grab Dad! My response was,
you better come here then. There doesn't seem to be a cure for this problem but
there are ways to keep it manageable. I have also found that the support group
P.P.S.A. encouraging and helpful too.
