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I am in my 10-11 month since I contracted GBS. Up to mid-August
I felt the earlier stiffness I had in my legs and lower back
was improving but since then it seems to have regressed; hence
my concern. I have read various literature on GBS but I have
not read
BRIEF HISTORY
Feb. 10/03 Felt a tingling in finger tips while vacationing
in the UK.
I had a bad sore throat - was under some stress and a bit
run-down. 5 days later legs started to fail.
Day 1 Feb. 16 Entered Frimley Park Hospital (UK).
Day 3 Unable to walk - legs and arms paralyzed (could rotate
my feet at all times).
Day 4 GBS confirmed following a lumbar puncture and immunoglobulin
started.
Blow test was 3.1. (Day 8 it was 1.41. By Day 21 up to 2.95).
Ventilator avoided.
Day 8 Passive physiotherapy started.
Day 24 Stood very shakily for 2 mins.
Day 28 Discharged to Unsted Park Rehabilitation Hospital.
Day 45 Walking 400 yards. Legs/lower back v. stiff; it begins
within first 10 paces.
Day 60 April 15 Discharged and returned to Vancouver April
17.
MY KEY PROBLEM
On return from the UK the prognosis for recovery seemed
good. I started walking around the top of my driveway and
then advanced to walking around the block. Later I was walking
about a mile with a rest and stretching halfway. While the
stiffness still existed it did tend to ease and I had an occasional
hit on the tennis court for 20-30 mins. with 1 or 2 steps
to reach for the ball. My walking seemed more fluid and less
jerky.
However, from about mid-Aug I started to feel quite stiff
and walking was getting painful so I stopped and have done
minimal activity since then.
At 3 a.m. on Aug. 17 I woke feeling quite stiff in legs/back;
'fizzing'on my shoulders and left side, lower rib cage for
the first time; and felt I was not breathing fully. Being
worried, I went to LGH emergency at 3 a.m.
After an examination by Dr. Watt, indicating no obvious problems,
we decided I should return home - 7.30am.
The stiffness is in my quads, glutes and knee of my left
leg and across buttocks. Right leg has lesser stiffness/same
area. The stiffness is not a cramp of the usual spontaneous
type but is probably better defined as a considerable 'tightness'
in my muscles which exists 24 hours a day; it makes walking
a bit jerky even difficult at times. The stiffness usually
increases with walking or when I have been sitting for a while.
In the mornings on waking it is sometimes difficult to bend
my left leg as the knee is quite stiff; straightening my legs
on waking in the a.m. often causes a spasm in my lower back
until I get up and move around.
Hot water showers tend to increase stiffness.
The stiffness/tightness stays all day with varying degrees
of effect. This condition has existed since about March 30
when I first started to walk again. (Not so concerning are
tight bands around ankles and thumbs, fizzing/sensitivity
in my hands and left hand will not close yet).
I have had four sessions of acupuncture for back/legs, which
helped only for about 24 hours after each session. I have
regular sessions of massage, which helped initially. I have
had physio/OT at LGH from May 8- Sept 10 for1.5 hrs/week.
I do regular exercises at home with stretching and some work
outs at a nearby gym.
I still have this stiffness at Dec 30/03. My specialist advised
her nerve conduction test 10 weeks ago indicated my motor
system was good but the sensory system had a way to go and
might not repair fully.
On Jan 7 she advised I had much the same condition and might
have significant recovery in a years time(a longer recovery
period because I’am 71). I could push myself as much
as I felt reasonable without damage to the nervous systems.
Last year my wife and I were trekking in Nepal and in California
so this year has been a bit of a loss!
Patrick Hill
01.2004
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