C[omp]ute

From: andrew cooke <andrew@...>

Date: Wed, 5 Jun 2013 19:44:09 -0400

[Mainly a personal note, on MS.  Please skip...]

This is a follow-up to http://www.acooke.org/cute/HowIAm0.html - every 3
months I am planning to record my current state.

Now 7 months from being diagnosed, 6 months on Betaferon, and 4.5 months
since the last corticoids wore off (so 4.5 months when I could have had an
outbreak, but apparently haven't).


So, where am I now?

The right hand is significantly better (it improved in the last month).  It
still has PN (pins + needles) when I touch something, but I can kind-of sense
textures.  There's much less pain on a morning and it's not as stiff.

Left hand as before - almost normal, some PN in two fingers.

Below the ribs I very rarely have PN now, and the discomfort when lying on my
front is less.  But the "affected zone" seems to have moved upwards (or
perhaps this is additional damage from the second outbreak) - I have felt some
PN under my chest muscles a couple of times.

Indigestion gone; anus AOK.

Legs are strange, in that they are generally fine for walking, but continued
to have issues as different nerves / muscles fix themselves (see below).  I
had no idea there was so much damage (so many different places).  A major
breakthrough happened a few weeks ago, that I guess is somehow leg-related - I
was able to run for more than 15 minutes -
http://www.acooke.org/cute/ImaMACHIII0.html .  But I can still feel "sausages"
in my thighs when I lie face down on the bed, so there is more to fix.

There's a patch of mild, permanent PN underneath my left foot!

My back no longer has "sausages" (and I seem to be able to feel things like
the rattanwork chair), but often has muscle aches.  The sides can be
uncomfortable to lie on, but that seems to be getting better.  Sometimes I can
raise my arms fully (eg washing hair) with no issues; other times it feels
restricted or aches.


My understanding of what is happening in my body hasn't really changed.  The
re-mylinization appears to be cyclical, with a period of 3 days - 2 weeks, so
I have a series of good days or bad days (time in Europe was good,
thankfully).  On good days, pretty much everything is OK except for some
random PN and the right hand.  On bad days I have "exploding head" and
muscular aches and/or twitching muscles.  Twitching is very small scale and
not at all a problem.  Feels quite reassuring actually - that something is
getting better.

I am not taking Ibuprofen (second Dr was pretty surprised by how much I was
knocking back when I went for tge GES-related 6 month check) and no longer
seem to need it anyway (except one pill on injection nights to avoid fever).


Today I went to see the main Dr.  He was happy with everything (I felt like I
was presenting a successful science project at school!).  I have prescriptions
for two MRIs (neck and head) in case there's asymptomatic damage and he
suggests that I use the MRI at Davila rather than Integra Medica (both much
cheaper for me than Clinica Alemana - at Davila I could even use GES).


OK, end of brain dump.  Hello to future self.  Keep on rockin'

Andrew