| |
I woke up on the morning of the 8th July 2001, with what I thought was a very bad back. I had trouble getting out of bed, even turning over was a nightmare. When I could stand it felt like a knife was going into my lungs with every breath I took. (I was 46 at the time)
I stayed in bed most of that day, and next morning got up to get ready for work,
only I had no energy, I would not have made it to the corner, with my backpack.
So I went back to bed, and slept again. I did manage to get my chiropractor
on the phone, as I had been having treatment for a bad back, and she drove
down to pick me up and then worked on my back. She made the comment that
I had a massive muscle spasm the worst she had seen in years. To even get
in the car took 15 minutes, and after the treatment I felt no better, so
she drove me home again, where I rang my GP for an appointment later that
day. He had the same diagnosis, a massive muscle spasm going from my neck
to the lowest part of my spine.
I did nothing but sleep for the next week, every time my sister in law would ring
me I would either be asleep, or just coming and getting back into bed. This
lasted for 3 weeks, then I had had enough and tried to go back to work,
I managed 3 afternoons, (I was a telephonist for a finance company) then
when I had to report back to my GP on the Thursday, he touched lower down
on my spine and my leg went on me, so I was off work, and I never did return
to work.
It was around this time that the headache, pressure in the back of the head and
the dizziness started. The headache was at the front of the head, over my
right eye but more towards my hairline. The pressure at the back of the
head was the worst though. If I was to put my hand at the back of my head
the area of pressure was bigger then my fist. It felt like someone was pressing
with great force. All my doctor could tell me was that it was a migraine
but it was like no other migraine I had ever had or read about.
This lasted for weeks, and I got worse as time went on. Going back and forth to my GP was a nightmare, travelling on public transport. Then in early September of that year I started to have other problems, I could not walk a straight line, my right leg would go to the right not in front of me, It would take me 35 minutes to walk around the block that usually took me 8 minutes.
On the Monday morning visit to my GP’s I had been given an injection for pain,
and told to rest before going home. I did that and walked out the door of
the surgery, down the street and felt so funny, I then rang my husband and
when I tried to talk I was slurring my words so much, I managed to catch
the bus and he met me at the tram, I was walking like I was drunk, (but
as I never drink alcohol that was not funny), Hubby got me home, and I slept
again, waking up hours later still with slurred speech, well I played tag
with my boss on the phone, and when we finally managed to connect she thought
I had suffered a stroke.
(I had visited my sister in law on the Saturday before Father’s day, but what
I did not know was that I had an all over tremor. My sister in law was taken
to hospital in an ambulance, and I then had so much trouble walking back
into the house, and her step son, very high up trained first aide person,
had me lay down on the bed, and he kept coming in to see me and talk to
me. It was not till the next week, that she told me I was even slurring
my words on the Saturday night.)
An ambulance was called and I was taken to hospital at 6 pm on the Monday night,
only to be told it was an A typical migraine and to go home. This was at
3:30 am so I had to take a taxi, I rested all the next day, and saw my GP
again on the Wednesday, I was feeling a little better and my speech was
not as slurred. I had lunch and went to do something and when I spoke again
my speech was slurred again very badly, my walking was terrible. Hubby and
my sister in law thought I had suffered another stroke, so back to the hospital
I went. No it is an A typical migraine, go home.
Well the next day, I had an appointment with a specialist in town, and she sent me back to the hospital to have a MRI done as my reflexes were so abnormal, my eyes would not follow her finger, and I could not touch my nose with my finger after touching her finger. This time I was admitted and given am MRI, which they tell me was clear, but I could not stop moving now, my walking was all over the place, my speech still slurred.
I would go back and forth to the hospital for the next 7 months on monthly visits to see the neurology and medical departments but no one could tell me what was wrong.
From then on it became a nightmare, doctors telling me they do not know what is
wrong but one neurologist said it was not a migraine but he did not know
what it was. In the January I had my first turn, I would bounce for a while
then my arms would go all over the place and I had no idea of what was happening.
They wanted me to see a psychiatrist, and I refused, I had seen a psychologist
and he said all was fine, that I was not suffering from post traumatic stress
disorder as I did not have any of the 10 symptoms.
Early in the New Year, I was sent to see a neuropsychiatrist and he said in his report that it could be conversion disorder, but my new specialist did not agree.
In April of 2002 I was sent to a wonderful lady doctor, who on the first visit
took an hour with me, looked in all medical books and said that she would
not stop till she found out what was wrong. I was then tested for a lot
of diseases, including Lupis; I was on the borderline, Huntington’s chorea,
Wilson’s Chorea, Mad Cows disease, and some I do not even know the name
off.
After a visit to the neurologist she sent me too, and his report said it was caused by a trauma in my past, well she laughed herself of her chair, we then went back over everything, some of her questions I could not answer, as I had no memory of the June of the previous year, and my husband told her that I had spent two weeks in Echuca up on the Murray River, and her diagnosis was Encephalitis following Meningitis in the spine. Now that all made sense to me, as I had about 12 mosquito bites on my back and they would not heal at all.
I was put onto Sinemet tablets and that reduced the movements I had, I visited
my sister in law that Sunday, and the first thing she said to me, don’t
stop the medication, (but she had not been told I was on medication) after
being on the medication for 3 weeks, my doctor said to reduce the dose,
so I did, and that Sunday we went back to visit my sister in law, the first
thing she said to me was to get back onto the medication, but I had not
told her I had been asked to reduce the medication.
But the neurologist could not understand why this medication worked, only that it did and he was not going to take me off it.
After a time my special doctor wanted me to see a professor and that took 6 months to get in to see him, and when I did, he did not agree with her diagnosis, as the birds were not around to infect the mosquitoes, or some such thing. Though he ordered me to have a spinal tap nothing showed up in it, but in his report that I was given a copy of only last month, he is now in agreement that I have had meningoencephalitis but it was such a long road to finding out.
It is coming up to 2 years now, and for the first time since all of this started I feel I am finally recovering, I am on 7 ½ tablets a day but I am not bouncing for most of the day. My speech is still slurred but not as much, though my walking is still not good and I do need to use a walker to get around out side the home.
1st update
The professor gave me the name of a medication that would last longer in
my system, I gave the name of the medication to my specialist who wrote
the script out, but no one bothered to check the dosage I was on, the new
script only halved the medication, it took all of 5 days, for me to be bouncing
around the house again, not able to feed my self. I went to the chemist
and they did not know what was happening, so I had to ring my specialist,
and it was then I found out that they had halved my medication, and from
then on I have had to increase the mediation approx every 18 months to 2
years, until the middle of 2006 I was up near the legal dosage allowed on
this medication. So I was put onto a second medication to enhance the first
but it has some nasty side effects, including increased desire for gambling,
and now that medication has been taken of the market in the U.S.A.
2nd update.
Doing much better, I have even had some of my quilts on display at the local
art gallery twice. In March or April of 2007 I walked in (using my wheelie
frame) to the community radio station here in Maryborough, and that was
one of the best days of my life. After being inter-views for the C.W.A Craft
Day we were having, I was met at the studio door, by the station manager
and asked if I wanted to be a presenter, and after one training session
I was on air the next week, and have not looked back since.
As of May this year, (2007) I am a presenter on the community radio, doing community hour, and even have my own show on a Sunday called Marie’s Melodies. I love music especially from the movies of the 1930’s onwards.
3rd update
Have had a little backwards step, when I could not get my normal capsules and had to take the tablets, and they do not work as well, so now will have to make sure when I get a script that the doctor puts down capsules and not tables, as the chemist has to have a special code to order the medication in for me. (Apparently there is only one other person on this medication in this area when we live)
4th Update
It is now 2009, and I am no longer able to work at the radio station but I do still do my show from my home computer. I am in more medication and am still having problems with my muscle control. As far as I know I am one of 3 that have been diagnosed with Post E movement disorder.
Marie
Australia
Posted: May 29 2009
|
|
 |
