C[omp]ute

From: andrew cooke <andrew@...>

Date: Thu, 5 Sep 2013 23:10:08 -0400

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

Now 10 months from being diagnosed, 9 months on Betaferon, and 7.5 months
since the last corticoids wore off (so 7.5 months when I could have had an
outbreak, but apparently haven't).


The biggest news since my last update is that I had a control on ~26 June
(soon after that update) - a MRI scan of neck and head - that was extremely
positive (no new lesions).  That implies that, at least at that point, the MS
was completely "under control".  The Betaferon, presumably, had stopped any
further progression (at least in the neck and head; the argument being that
anything significant in the spine would cause noticeable symptoms).

So the underlying disease seems to be halted, for now.

Symptoms from the previous attacks remain, but have slowly (VERY slowly) been
improving.  The right hand has continue to improve - I still have PN when
touching things, but can feel different fabrics and have much easier movement
(although still slightly stiff, especially when completely clenched).  If the
hand is in a pocket when walking there are PN, but I can feel the inside of
the pocket.  I noticed that I am starting to pay with loose change again.  The
upper right forearm still feels "stiff" and behind the upper arm, above the
elbow, still has some PN when rubbing against clothes (but, again, less than
before, I think).

Below the ribs I often have no discomfort, but there is still an odd sensation
in the chest when running (well, not so odd - it feels like something is
paralysed, and I guess it is, but I am not sure what).

I am less tired than I was.  Sometimes napping just once a day.  When I lay
down I often notice that the muscles on my sides are "tight".

Legs continue to have symptoms, but the areas that were problems (left knee
twisting, cramp below right knee) have cleared up, and others appeared (right
thigh; there is still a sausage there too, at times, when I lie on my front).
The patch of PN underneath my left foot seems to be going.  All this seems
consistent with continued slow improvement.  Jogging remains similar to before
(see details below), but with less PN (still some below knees).

Recently, back has been clear of aches and pains.  The chest muscles around my
right shoulder still feel "fat" at times, but there's no real restriction on
reaching upwards.

I sometimes feel dizzy for a moment, but "exploding head" seems to be rarer.

All these symptoms are variable.  When we went to Europe they almost
disappeared for a time.  Similarly, earlier this week.  I get the impression
that recovery is becoming intermittent (and between-times, less inflamation
means less symptoms).  I have written more details above than in previous
entries not because I have more symptoms, but because there seem to have
reached a smaller, more manageable, number, and can be catalogued in more
detail.


I want to start tracking numbers, so I bought a digital watch and timed my
run.  It takes less time than I thought - I managed 13m19s, over what Google
maps says is 2.6km (1.6 miles), so that's 8m14s miles (and that was a good run
for me) (Google maps is now a great way of measuring distance - you can drag
markers to make a circular route and get distances).  It would be nice to get
a little faster and then increase distance to 5km - 12m7s would be 7m30 miles
over the same route.


So, in summary, underlying disease appears to be on pause, while symptoms
slowly improve.  Am beginning to suspect that symptoms I still have aren't
going to improve much more, but there are still moments of surprising strong
change so who knows?

Hello to future self.  Keep on rockin'

Andrew