C[omp]ute

From: andrew cooke <andrew@...>

Date: Thu, 5 Dec 2013 08:23:32 -0300

http://www.acooke.org/cute/HowIAm0.html
http://www.acooke.org/cute/HowIAm20.html
http://www.acooke.org/cute/HowIAm30.html


Now 13 months from being diagnosed, 12 months on Betaferon.


Unfortunately, things are currently (1) confused and (2) not as good as they
could be.

About 6 weeks ago I had a night when I couldn't sleep.  This was partly
indigestion from Pizza(!), but also "zaps" in my head every time I was about
to fall off.  At 4am I finally lost consciousness.  But there's a "rule" in MS
- a symptom that doesn't last 48 hours doesn't count - and the next night I
slept fine.  So it seemed to be a random one-off.

Then other weird things seemed to start happening in my head when I tried to
fall asleep - somehow my eyes would drift somewhere and my entire head would
"reset" in a completely undescribable way.  But maybe I was obsessing over
things that are actually pretty normal?  This wasn't a clear physical symptom.

Finally, a month or so after the pizza, I woke at ~3am with a huge jolt in my
head.  That was, finally, enough to get me to the doctor...

...who was as uncertain as I was.  So we got an MRI of my head.  The report
that came with the MRI said that there were new lesions.  That means the MS
hasn't stopped.  So we needed to move to a new drug.  That's NOT good, because
we're moving from the old, tried and tested drugs to newer, more potent
options, with much worse side-effects and risks.

But that's what seemed to be needed.  So off I went to my "other" doctor, who
is connected to the public health service.  Which is when things got
complicated.

She looked at the scans, and couldn't see anything significant (and she showed
me, and I couldn't, either).  So she was not all convinced that changing drugs
was worth the risk.

And that, more or less, is where we are now.  Since then I have had an EEG,
whose results I will pick up on Friday, and the second doctor has talked to an
expert in analysing images, but hasn't, yet, talked to the first doctor.

Oh, and my head is actually much better this week!  I am still getting
twitches, but less zaps and resets.  This isn't s surprising - they appeared
to be small lesions, and the brain has an easier job healing than the spine
(more dimensions to reroute in).


What now?

Well, what *I* want is consensus in my "team".  Either option - changing drugs
or not - has risks.  More importantly, for the long term, I need a way to get
these two doctors to talk.  Unfortunately both are busy and I don't want to
get caught in the middle, playing "he said / she said".  So for the moment I
need to be patient.  I have another appt with the second doctor on Friday when
I will pressure her again.  Then I return to the first doctor on Monday in the
hope he has experience with this and can help.


Otherwise, my symptoms from the first outbreaks continue to progress very
slowly.  My right hand feels slightly better - it's now less "pins and
needles" and more just "slightly asleep and stiff".  My running route just
increased slightly (3.6k at 8m15s per mile) and my legs feel stronger.  The
pins + needles I used to have on the sole of my left foot has gone, but
there's still something in the toes.

My chest doesn't seem to have changed, though - I can still feel a "bar" if I
sleep on my front - and while my back often feels much better the sides below
my arms felt "tight" today.


Hello to future self.  Keep on rockin'

Andrew