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Welcome to my blog, which was once a mailing list of the same name and is still generated by mail. Please reply via the "comment" links.

Always interested in offers/projects/new ideas. Eclectic experience in fields like: numerical computing; Python web; Java enterprise; functional languages; GPGPU; SQL databases; etc. Based in Santiago, Chile; telecommute worldwide. CV; email.

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How I Am 5

From: andrew cooke <andrew@...>

Date: Wed, 5 Mar 2014 00:05:43 -0300

http://www.acooke.org/cute/HowIAm0.html
http://www.acooke.org/cute/HowIAm20.html
http://www.acooke.org/cute/HowIAm30.html
http://www.acooke.org/cute/HowIAm40.html


Now 16 months from being diagnosed, 15 months on Betaferon.


The confusion described in the last report was never really resolved; I am
still having tests that might give evidence for mental impairment (or, at
least, serve as a zero point to make future comparions against).  Although
having taken 2/3 of the tests I suspect you'd have to be in strong denial for
them to detect something unexpected.

Apart from that, and one worry about my throat, things have continued "as
normal".  I am still very slowly improving.  My right hand is still a little
stiff, and the fingers have some pins and needles / waxiness when touched, but
the hand can extend flat with little resistance.  My left foot has less PN
(moved from the sole to the toes) and in general my legs seem stronger.

I still have some problems with the thighs when running; the sides of my chest
below the arms can feel a little swolen at times; the band across my front is
usually present to some degree at night when lying face down on the bed.

Zaps are less frequent; resets too (although I am also trying to pay them less
attention).

A recent blood test showed reduced levels of lymphocytes, which is a known
side-effect of Betaferon (or maybe even a direct effect).  I have some issues
with fungal infections on the skin, but they are minor (sounds worse than it
is!).


The throat issue was over January.  I decided to reduce my Ibuprofen dose (and
am now not taking it at all, except to treat occasional pain) and so cut
lozenge shaped 400mg pills into two.  This gave sharp-edged fragments that
stuck in my throat.  At the same time I had a couple of problems swallowing
while eating, felt there was a numbness when I tilted my head forwards (the
skin folding under the chin), and missed the feeling of hot liquids at the
back of my mouth / throat.

None of this was terribly conclusive.  The pills were a new shape and the
other symptoms could have been always present, and now noticed due to small
improvements.  Things improved over the month (although I am not taking the
half-pills so have no data there).


So nothing very new.  If life continues like this, it is not so bad at all.
My hope, soon after diagnosed, was that I could get at least 2 years between
serious outbreaks (giving me perhaps 20 years before very serious
incapacitacion).  I am around half way to that goal.


Let this not be the calm before the storm.

Hello to future self.  Keep on rockin' 

Andrew

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