Here I will try to explain my experience with Multiple Sclerosis, so far.
Let me explain one thing first, I never seem to make things straight forward,
or easy. Over the years many people - including Doctors - have said that I seem
to like setting challenges and not fitting into the 'normal' framework of things.
My family, especially my parents would certainly agree. It seems that I have
also followed this trend with my MS.
Looking back, and after doing much reading from many MS related sites, it seems
I may have some early symptoms for some time, but as is often the case, these
symptoms were put down as other things (and maybe rightly so). This includes
near continuous head-aches, lower back pain - usually
on the left side, 'high' and 'low' mood swings, and the dreaded itchy skin -
mainly at night. Most of these symptoms have appeared over the last 3-4 years,
and have usually been contributed to my stress levels, or the beginning of menopause,
neither of which was proven, just assumed.
One Monday in mid October 2004, I developed a bad cramp in my left calf muscle
while going to my car to drive to work. I stretched the leg, gave it a quick
massage, and continued on my way. By the time I arrived at work, the muscle
was still sore, and I was limping. It continued throughout the day, although
I tried to rest my leg as much as possible (not an easy task in my workplace).
This continued for several days, but me being me, didn't give it much thought.
Over the week, I also found I wasn’t sleeping well, and had another one
of my head-aches. By Friday, I was very tired, and my left leg still seemed
sore and weak, I also noticed that my left arm was aching, although I didn’t
pay much attention to it, I was too busy to worry about me. I tried to rest
over the weekend;but there were always things to do. (I’m not very good
at saying 'no').
On Monday, I was feeling really 'down' and very tired, but I dragged myself
off to work. When I arrived, a workmate said I should go home. Eventually she
got me to make a Doctor's appointment for the next afternoon, and at about lunchtime
I went home. When I arrived home,I laid on the couch to rest, and slept for
4 hours. I woke still feeling tired, my leg was weak and unsteady, and my arm
seemed weak too. I ate dinner and went to bed, sleeping most of the night. This
was very unusual for me, as I normally function well on 4 -6 hours sleep a night.
By this time I realised there was something definitely wrong, and I was glad
I was seeing the Doctor.
The Doctor also noticed that my speech was slight slurred, and the left side
of my mouth was slightly dropped. By this stage, we were all thinking 'stroke'.
I was sent off for a CAT scan - clear. Next came blood tests, a full chest x-ray
and an ECG - clear. I was finding out that I was healthy in all these areas,
but my symptoms were getting worse, it was an effort just to shower and dress
now. Finally a MRI was ordered, this showed 4 small lesions - so now it was
suggested that it maybe MS. I was booked into the Neuro Unit of a local hospital
for assessment, and possible treatment.
I was given an IV coarse of Methylprednisolone over 3 days, and I was much improved,
although I wouldn’t say 'back to normal'. Back home, I took things easy,
but after a few days, I noticed that my symptoms were returning. By the time
I had been home for a week, things were worse than ever, so I went back into
hospital. After another IV treatment, there was some improvement but not as
dramatic as before.I had a Lumber Pucture and vision tests done, both came back
as normal, and the Neuro said that this was unusual in MS cases, but not unheard
of during the early stages. After being told that yes, I did have MS (early
stages and mild at this stage), I was given some physiotherapy exercises and
sent home. It was arranged for me to have weekly visits at home from a physiotherapist
and an occupational therapist, as I was unable to drive to appointments etc.
At this stage, I was still unsteady on my feet, but didn’t need any aids
to walk; I needed a shower stool to shower, had trouble dressing, and couldn’t
walk very far and was very slow. I also couldn’t use my left arm/hand
for much because of the weakness. I also had co-ordination problems with my
left arm/hand/fingers which made many tasks difficult. (thankfully Im right
handed),
It is now the start of January 2005, and through the physio exercises I’ve
slowly regained some of my strength and co-ordination, however, I’m still
unable to resume driving and work, and there are still many tasks I have some
problems with. As yet I don’t know what type of MS I have, they tell me
to wait and see if I have another 'episode'. The Doctors at the Neuro Unit are
undecided as to if I’ve had 1 episode that improved then declined, or
if I’ve had 2 separate episodes close together. I suppose time while tell.
So far I’m not taking drugs, have tried to change my eating habits to
a healthier diet, and am trying to keep a positive attitude most of the time.
I’m also very thankful for my family and friends who are being very supportive,
and help keep me smiling.
The things that I’m finding hardest to cope with at the moment are the
fatigue and the itchiness. I can be tired when I go to bed, start to relax and
doze, then the itchiness starts, and sometimes 'jumping' or 'twitching' in the
arm or leg.... ARGGGHHHHHH... I’m wide awake again, and cant get comfortable
to sleep.
Im learning to say 'no', or 'now/today is not a good time for me', and Im also learning to ask for help when Im not coping with something.
My journey with MS continues............. and I will add to this site as I can,
on the next page, I have included some of the hints and tips I've found useful
in coping with life since my diagnoses, I hope someone else finds them handy
too!
In my research about MS, I have found these sites very useful.......
Multiple Sclerosis Resource Centre