I hope this will give you some insight of what may be happening. This is
from what I have learned and experienced.
In 1971, I was paralyzed(transverse myelitis) for 3 months to T2 level
due to mononucleosis. I got about 95% of the feeling back. The major
residual effects from the paralysis was incontinency and spasms. I walked
without much problem and worked until 1987 when my muscles became tight
and I could only stand for about 5 minutes before pain would start in my
The severest of the spasms was in my left leg. I could sit in a chair and
my left foot would jump 6 inches off the floor. The spasms occurred
mostly when I was
real relaxed--just about to fall asleep. During a test the spasms
occurred at the rate of one every 21 seconds.
In 1989 I went through a blind study for an infusion pump made by
(You should see FDA protocol!)The pump delivers medication Lioresal
(baclofen--an anti-spasmodic) continuously to the spinal column.
The blind study consisted of a cystometrogram(bladder test) in which 16
electrodes to record the activity were placed below the waist. One day a
saline solution was injected into the spinal column. The next day the
drug was injected. Only the doctor who did the injection and a nurse knew
what was injected each day. Neither were involved in the testing
A saline solution was dripped into the bladder through a catheter at two
different rates. At the fast rate, my leg spasmed sooner and than the
slow rate. The bladder held more at the slow rate before I had the urge
to urinate than it did at the fast rate.
I responded to the blind study. The infusion pump(about the size of a
hockey puck) was implanted my left abdomen just below the skin. A
catheter going to the spinal column(L4) is also implanted just under the
skin. The pump is filled with a needle which goes into a rubber septum in
the pump. I get the pump filled every three weeks. The dosage and rate of
filling is different for most. Most go longer times before filling than I
do. The main concern is that the dosage does not cause too much weakness.
A happy medium has to be reached.
I use to take 80mg of Lioresal a day and it did nothing. Now I get the
medication at the rate of 50 micrograms/hour (1.2mg/day). The spasms in
my left leg were considerably reduced. The incontinence was reduced to
the point that I stopped using incontinent pads. I do have a few
accidents, but that is when I have not followed a regular time schedule
of emptying my time schedule.
I do a self-cath once a day because I have a 220cc residual in the
bladder. This has greatly reduced bladder infections. I now walk using a
cane outside for short distances. I use a wheelchair for the long
I never knew the significant effect the bladder had on the nerves in the
lower body until I had the blind study. Before the pump, I used to have a
couple of drinks in the evening hoping to relax my legs so I could go to
sleep easily. I did not know at the time that I was aggravating the
situation because of the alcohol causing a faster rate of flow of urine
into the bladder. Bladder infections also caused more intense spasms.
One of the doctors in the study, a urologist. I can not tell you the
number of times I heard him say, "bladder and bowels, bowels and bladder.
" I have noticed if I was gassy or sometimes about due for a bowel
movement my leg would start to act up.
Keep a tab on the status of the bladder and bowels when things are acting
up or causing pain. I believe you will find some correlation quite a bit
of the time. I have noticed my leg acting up a little when drinking cola
products. I believe it is due to the increase of acidity in the bladder.
A full moon would also cause an increase in activity. My ex told me that
when she worked at a school for the handicapped children, the kids would
become more active.
Another doctor in the study, a specialist in rehab medicine, said that
muscle tightness is the major cause of pain in 95% of the cases. Try
stretching, it may help. It has helped me quite a bit.
The nervous system is a very strange network. One incident that occurred
during the study showed me this. Everything was quiet except one needle
on the graph. It would go dit dit dit dit............ It was the output
from the electrode
connected to my right thigh. I was not feeling the activity. Someone
touched my left leg and the dit dit dit.............. stopped?????????????
As I said, this is what I have learned and experienced. I hope it may
provide you some benefit.
JOHN MCFARLANE JR USZA49A at prodigy.com