## How I Am

From: andrew cooke <andrew@...>

Date: Tue, 5 Mar 2013 13:39:58 -0300

[This is a very self-occupied post about MS.  You may want to skip it.]

As my illness progresses I am having a hard time remembering how I was.  This
is important because it helps me know whether I am getting better or worse.
And it also helps me gauge my current symptoms.  So I am going to record how I
feel right now.  I am also going to mention how I think I was, because I have
no earlier record.

I am now 4 months from being first diagnosed (at the end of Oct 2012).  I had
a second outbreak early in December and finished the corticoides related to
that on Dec 14 2012.  I started taking Betaferon on Nov 20 2012 so have
recently completed 3 months (and a complete cycle of injection areas).

So my outbreak in December was after only a month of Betaferon, which takes
around 3 months to become fully effective.  Since then I have had no more
major outbreaks.  Which is good.  It suggests that the Betaferon is working
(lowering the rate of outbreaks).  It is possible I have had some minor
outbreaks and it is also possible Betaferon reduced the severity of the
December outbreak (see below).

My first outbreak affected four regions.  Vertically downwards, starting with
my hands - my right hand in particular, which was completely numb and with
muscle stiffness (and so largely useless - fine motor control seems to require
nerves for feedback).  Note that I would not have used "numb" at the time,
since I had "pins and needles" (PN), but I now see that the PN is just noise
in nerves, and that what was important was a lack of any tactile sense.

The second region was a band just below the ribs.  Perhaps the diaphragm?
This felt as though a "tight belt" was present.

The third region was my anus (this may be connected with the second region and
a general lack of feeling for bowels in general).  While I was not
(thankfully) incontinent, I had no feeling ("fire and forget" being a
memorable phrase I used to describe going to the bathroom).

The fourth region was my legs.  Much PN and associated lack of sensation.  In
retrospect I lost fine control of my calf muscles - a the time I only knew it
was slow to go up and down stairs.

The second outbreak affected the muscles at the top of my torso; around the
shoulders, and down to the small of the back; upper arms; perhaps the neck and
throat.  Sitting in a car seat it felt like there was a "sausage" running down
my back; similarly moving my right arm it felt like there was extra muscle
(not mine) on my body.  Both can be attributed to a lack of feeling to those
regions (which then push in an "unexplained way" on other parts of the body).

The level of PN and reduced mobility for the second outbreak was minimal - it
is only during muscular pain on recovery (more below) that I became aware of
the large are affected.

So, where am I now?

The right hand is now usable to type.  It still has significant PN, and is
stiff (particularly on a morning), but I can (with care) extract small change
from my pocket and pay with coins.  I can also write pretty much OK.

The left hand is almost completely normal.  Some very slight PN in the
outermost two fingers.

Below the ribs I no longer have a permanent band, but I do still have
significant PN, particularly when jogging.  Also, I have related
uncomfortableness when lying down on my front.  I also noticed small signals
from my bowels (wind passing through) which I had not noted missing at first.

I had significant indigestion for a time.  But after some ion pump blockers
that cleared up.  Unsure if that is related or not.

The anus is - I am pleased to report - completely fine.  I can fart silently
again.

The legs are significantly better.  At times there can be pain or PN in
particulare areas, but also, on a good day, they can feel like "normal".  I
started to jog again.  At first I could manage only a minute or two
(literally) and had "twitching" of muscles.  I can now manage nearly quarter
of an hour, and am limited more by poor fitness and general PN (see below).

The muscles in my upper body are painful.  This is the damage from the second
attack - that it is in the process of recovering at the same time as the rest
suggests that the damage was less deep.  The pain is "muscular ache" and can
be treated effectively with ibuprofen.

From my doctor I understand that my body is in a process of fixing itself up.
And that this can cause swelling in the column that gives symptoms not unlike
an outbreak.  And this is true - I sometimes feel worrying like I am ill.  My
head sometimes feels "unstable" (I do not have a good way to explain this - it
is not dizziness, but more like a pending migraine).  I seem to have "vision
issues" and a hard time concentrating at times, but it's very difficult to
describe.  I wonder if there was a minor outbreak in my brain?

At one point I had a sore/aching throat while Paulina had a sore throat.  So I
assumed it was a virus.  But since then my neck has ached more.  I wonder if
this was a small outbreak?  Alternatively, it may be muscles related to the
second outbreak.  I also noticed a week or two back that I was suddently
sensitive to drinking hot liquids (implying that earlier I had been numb).

More generally, improvement can feel like regression because some muscle or
region transitions from being completely numb (and so unnoticed) to painful
(or noticeable as a "lump" or "sausage").  At first I found this very
worrying, since it appeared to be new symptoms, but now I am more used to the
process.

I need to take around 1600mg of Ibuprofen a day (400mg every 4 hours while
awake).  I can sometimes take less, but there is a very slow lag (~12 hours),
so if I reduce too quickly I then suffer for a fair time later (ie next day).
I do not understand why - one guess is that it has the anti-inflamatory effect
that I am noticing.

OK, that's all I can think of.  Hello to my future self checking this.  I hope
you are feeling OK.  Good luck me.

Andrew