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Friday 25th january
2002: D-day! I'm going to talk
to the consultant neurologist at
Glostrup Hospital today, at 11.30.
Started out by asking
whether what I have is GBS.
There seem to be several ideas as
to what it may be, and I'm at the
stage where I don't care whether
it is a mild or severe variant,
just as long as I know where I stand!
IT ISN'T GBS!
I sat there open-mouthed (as open
as it could get!) as I'd been told
earlier that the doctors were 99%
sure it was GBS! But then I guess
it was much earlier, where it seemed
to develop like GBS, just slower.
I also asked about
the spinal tap results that showed
an increased protein count. He said
that all nerve inflammations in
which the nerves in the spinal cord
were inflammed, would show raised
protein levels. As I also displayed
"sock/glove" symptoms and was paralysed
in the face, they thought it was
GBS.
Luckily the symptoms didn't develop
further (as if what I have isnt
enough) and so based on this, as
well as the results of the tests,
he was now eliminating GBS. Whew!!!
As for the matter
of what I have, if it's not GBS,
and how I got it, he couldn't say.
He's still waiting for the results
of a test that's due back on tuesday,
which should indicate if it's due
to a virus. He didn't think it would
be positive, though, as I have beguns
showing signs of improvement in
my face. My hands and feet are still
painful, in fact they're worse today,
and the headache is still the same.
When I asked about the headache,
he explained that it might be due
to my being very tense, he wasn't
sure.
He increased my
medication, I'm now on Ibuprofen,
from 400 mg he's set me up to 800
mg, to be taken only in the evening
to try to get some sleep. If this
doesn't help, I should come in on
monday, so they could try to find
something else that could help.
So the conclusion
seems to be: The docs have found
out I have a peripheral neuropathy
similar to GBS. They don't yet know
how it came about nor how it should
be treated. I have to undergo another
test soon (forgot what it's called..)
that is to measure the nerve impulses
in either my hands or my feet.
I don't have to
show up like a bad penny at Glostrup
every day (fine by me, as the trip
is hard on my feet). I'm still registered
as an ambulant patient there, and
have to call every morning to find
out if there are tests to be performed
on me.
Well, that was friday.
More again soon, have a good weekend,
all!
Weekend 26-27
january 2002: My kids arrived
on friday afternoon for the first
time since christmas, it was great
to see them again, and they had
also missed me. They asked me about
my condition, but as they are 5
and 9 years old, they don't really
understand very much about it, especially
since I don't look sick. I told
them that daddy's hands and feet
hurt a great deal, and that they
shouldn't touch them.
We didn't do very
much doing the weekend, and at some
point we had 9 kids in the house,
and 7 of them stayed to dinner friday
evening!! :-)) Whew!! Good thing
we were going to have small do-it-yourself
pizzas.
My hands and feet are slightly worse
(can they get worse??) and so is
the headache. I didn't sleep much
between friday and saturday, just
a couple of hours in the afternoon
on a matress on the floor (we were
so many that I decided I'd better
let them have the sofa). The headache
is worst when I wake up, almost
unbearable, and it takes a good
long time before it gets a little
better and I feel myself again.
Mondag 28th january
2002: I haven't slept all night,
and called the hospital this morning
to talk to a doctor about the headache.
I have to go out there tomorrow,
and they'll give me something a
little stronger for my headache
and pain. By the way, I've an appointment
on thursday for EMG (Electromyography)
and NCV (Nerve Conduction Velocity)
tests. I'm not looking forward to
them, as they are probably going
to put a great deal of needles in
here and there! But I have to get
it over and done with.
Hope the last results of the virus
tests come in tomorrow, so I can
get some answers when I go in on
thursday.
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