Page
3 Page
5
Wednesday
23rd January 2002:
Arrived at the hospital at 09.00
and pretty quickly I got hold of
the consultant neurologist, with
whom I have an appointment on friday.
Despite his busy schedule, he sat
down with me and answered my questions.
I asked him
about the tests and why they had
taken samples, and whether they
were still assuming I have GBS.
To my great surprise he told me
that they are now in doubt as to
the diagnosis, I may have a mild
version of the syndrome, as I don't
have paralysis or weakness of my
legs and body!!
This was music to my ears, but he
said at the same time that it was
a form of inflammation of the nerves.
(They seem to be as confused about
this as the rest of us are!!). This
means that they actually don't know
what is the matter with me!! Hmmm,
is this a good sign or what?! :-)
The results
have still not come in for some
samples. Seems they are testing
for the presence of vira, as they
may be able to treat me for that.
They are testing only for those
via that they can treat (not very
many) and as I don't seem to have
any of them, they can't really do
anything for me at the moment.
My status
hasn't changed in the past week,
apart from the fact that my feet
and hands hurt even more. He also
mentioned meningitis!!! (Does that
attack the hands and feet?? And
wouldn't I either be dead by now,
or even worse than I am??)
I'm going back on friday for my
appointment with him, armed with
a list of questions. The results
should be back by then. Don't have
to be at the hospital tomorrow.
I hope they can finally give me
a diagnosis then, but perhaps they'll
tell me to wait patiently for this,
whatever it is, to pass on it's
own ....
Thursday 24th
january 2002:
Didn't have to go to the hospital today,
the results from my tests are not due
in today and I don't have physio.
I have not slept
last night, i.e. the night between wednesday
and thursday. I sat up and played computer
games until 06.30 today, and turned
off the computer then. Lay down and
tried to sleep but couldn't stand lying
down because of the headache, so I got
up again and helped the rest of the
family get ready and leave.
My hands and feet
hurt very much now, whereas the facial
paralysis now feels different ( perhaps
a sign of improvement?). I can now lift
my eyebrows a little, and almost purse
my lips!! :-) So something positive
seems to be happening. My cheeks are
very tender when I touch them, and I
am VERY tired, I need to be able to
just lay down and sleep for 24 hours
at a stretch!
I'm looking forward
to the consultation with the consultant
neurologist tomorrow, perhaps my condition
is showing some improvement, and I HAVE
to have some other painkillers /muscle
relaxing medication, or else I'm going
to go crazy!!
The one positive
thing that helps me a great deal is
that I don't have to worry about losing
my job. My colleagues sent me an email
today. It is really a great relief to
know that my job will be waiting for
me when I've recovered, but as my boss
said: Just make sure it happens before
you're 70!! :-) He calls every second
day to ask about how things are going
and to tell me what's happening while
I'm away. Among
other things, I've been told I'd better
be there on the 21/2 - we're all going
out to dinner and to the go-cart track.
I know I'm going, even if I have to
crawle!!:-)
All of this gives
me a sense of inner peace, there is
at least one thing I don't have to worry
about, a sharp contrast to the rest
of this horrible experience.
So all in all,
a pretty uneventful day again, apart
from the facial improvement. I'm going
to go to bed early today and try to
catch up on my sleep.
Page
3 Page
5
