NEW SUBCRIBER
AZMAINIAC (AZMAINIAC(AT)prodigy.net)
Mon, 20 Oct 1997 19:43:01 -0700
I know this is long, but his is a synopsis of my past with TM.
I lived in Millinocket, Maine, a small town of about 6000. In October of
1971 I got a flu shot. The week of Thanksgiving I was diagnosed with
mononucleosis. On Sunday, December 12, I was put into the hospital due to
weakening of the legs. On Monday, I got out of bed to urinate. I had to use
a commode because of the weakness in my legs. I did not make it to the
commode. I fell and caught my right hand in the bedrail. I was on my knees
and they were getting weaker. I finally got my hand unstuck and immediately
fell to the floor. I weighed 230# and it took 4 nurses to get me back into
bed. The only medication I was getting was vitamins
That afternoon, my mother came to visit. I had my legs crossed and asked
her to uncross them. After she did, she immediately went and called the
doctor. She wanted me transferred to a larger hospital in Bangor about an
hours drive away. The doctor did not know who to send me to at the larger
hospital, so my mother told hum to call the hematologist that my late
father had had. The hematologist told him I needed a neurologist. The
closest neurologist was 2 hours away in Waterville and another in Portland,
a 4 hour drive..
On Tuesday, when they wheeled me out of my room, I did not know whether I
was going to Waterville or Portland. As I was being loaded into the
ambulance, a red Cadillac with a white roof, I found out I was being
transferred to Waterville. My mother rode in the front with the driver and
one of my cousins rode in the back with me. There was no nurse in the
vehicle. When we reached Bangor, we stopped for gas. I slept most of the
way, as the doctor gave me something to sleep because I did not like riding
backwards, let lone lying down in a moving car—I was one who got car sick
when I was young.
When we reached Waterville, I remember being wheeled down a hall. I saw a
clock on the wall and it was ten minutes to one./ the next thing I remember
was seeing the faces of two doctors with their blue masks and hats. I then
felt a sharp pain in my throat and passed out again. When I came to, I
don't remember if it was that day or the next, I was connected to a
respirator attached at my throat. I could barely move my arms. I was
paralyzed to nipple level.
I was on valium, 25 mg every 4 hour, along with 20 mg of prednisone every 4
hours. I was in ICU for over two weeks and when I was moved to a room, I
was not on the respirator constantly and the paralysis had regressed to
below my navel. I remember the doctor using a felt pen to mark the level of
paralysis. My torso looked like a kid had drawn a bunch of lines on me. I
was told that I had Guillain-Barre Syndrome.
I started becoming concerned that I would be a paraplegic because the
regression to the waist level was fast and there was nothing happening
below the waist. Then in late February, the Physical Therapist, who had
been exercising my legs, pushed my leg back and I had a reflex to her
movement. The Physical Therapist was the most important person in my
recovery. She was German and the way she pushed me to do things, I thought
she was related to Hitler. There were some days I did not feel like going
to therapy, but she would not take 'no' for an answer. On March 31, 1972, I
walked out of the hospital with forearm crutches. I still had a foley
catheter.
I gradually improved. One thing I learned was to keep busy. I had worked in
a grocery store and they let me sort and mail the coupons they got in. I
can't tell you how may jigsaw puzzles I did. I even crocheted an afghan.
In September, I went to school. I went to an emergency room to have my
catheter changed. I had to have it changed about once a week because it
would plug up even though I irrigated it once a day. I lost count after
36. The doctor in the ER pulled the catheter out without letting all the
water out of the balloon. It did not hurt too much as I did not have full
feeling. When he inserted the new one in, he did not put it in far enough.
When he filled the balloon, it hit an nerve and I could not sit up. I told
him to take the #$#$%%$# thing out. He looked at the nurse and said, "This
gentleman is not happy with his catheter." I said, "You're (AT)##%$#(AT) RIGHT."
That was my last foley. I then started wearing Pampers as there were no
Depends or any equivalent on the market. I do not ever want to hear a woman
tell me how uncomfortable a Kotex pad is!!
I progressed to the point where I was working full time in a grocery store.
I was even unloading trucks. The only problems I had was incontinence and
spasticity in my left leg.
In 1974, I married and went back to school. I moved to Arizona in 1976 and
worked at a job testing light fixtures. I would climb the equivalent of 3
flights of stairs between 10 and 20 times a day. I was on Valium and Darvon
because of the spasticiy. My left leg would spasm when I was sleeping and
some days I would wake up with pain in my left groin.
The pain and spasms had been getting gradually worse. In 1978, I went to
Mass General to get checked out. Dr. Raymond Adams, Chief of Neurology, was
my doctor along with a resident who performed a lot of the tests. I had a
myelogram, spinal tap, EMG and some other tests. I was told then that I had
had Transverse Myelitis and not Guillain-Barre. I was put on Baclofen,
which had been approved by the FDA about 6 months before. About 2 months
after that I got a lecture from a pharmacist, a friend of my ex
father-in-law, who was a sales rep for Geigy. The one thing he stressed was
not to quit it cold turkey.
The doctor in Maine may have put TM in my chart, but the nurse said I had
GBS because there had been a patient in about 6 months before. In
1976,Guillain-Barre became well-known due to the swine flu vaccine. I still
wonder if the flu shot that I had in October previous to the mono had
contributed to the TM. To this day I will not get a flu shot.
In 1981 I changed jobs and had a desk job. The spasticity began to
increase. It got to a point where I was missing a lot of work. In
November1982,I had a T.E.N.S. (transcutaneoue electronic nerve stimulator)
unit implanted. It consisted of an electrode implanted on my spinal column
at T2 with a wire just underneath my skin running to a receiver implanted
under my left breast. I then attached an antenna, which looked like a flat
donut , to my skin where the receiver was. The antenna was wired to a unit
a little larger that a pack of cigarettes from which I could control the
unit. It generated an electrical impulse which gave a tingle about nipple
level. It would scramble the message about pain that would go to the brain.
I lost my job and began working in the home healthcare business with my ex
and her parents. I was making deliveries and even setting up hospital beds.
In June of 1987, I quit working and became Mr. Mom. I was having a lot of
UTI. I was slowly starting to go downhill. I began to tighten up and was
back in a wheelchair in July of 1988. I could stand up for about two
minutes without having pain n my left groin. I was put into Barrow
Neurological Institute in Phoenix. I was under the care of a neurologist
who is now Chief of Pediatric Neurology at BNI. I had a CAT scan on my
head to check for MS. The doctor said there was nothing there and I told
him a lot of other people already knew that. I had other tests and was told
that there was nothing that could be done.
I still had the feeling that it had something to do with the circulation in
my legs, so in February, 1989, I went to the Arizona Heart institute. Dr.
Dietrich passed me off to a neurologist. He recommended that I see Dr.
Richard Herman, who was Medical Director at Good Samaritan Rehab at the
time. Dr. Herman had spent 5 years at Temple, 5 years at Stanford and 5
years at Dartmouth in Rehab Medicine. He was doing research on the infusion
pump for baclofen.
I was given a cystometrogram and a neurocycle test in which electrodes are
attached to your legs and the pedaling is done for you and the results are
recorded on computer. I became the first 'guinea pig' in Phoenix. In June,
I went through a blind study. A CMG was run. Then something was injected
into my spinal column. It was either baclofen or saline solution. Only the
anesthesiologist who did the injection and nurse who assisted him knew what
was injected. After the injection another CMG was run. The next day, the
same procedure was repeated. On the second day, I really noticed the
difference about a half hour after the injection. It was the baclofen. All
this was done under FDA protocol. Everything had to be followed to FDA
specs, which is why it takes so long for drugs to be approved.
On July 17, 1989, The pump was implanted in my left abdomen. It is about
the size of a hockey puck. A small catheter is implanted just under the
skin and goes around to the spinal column where the medication is delivered
at about L2. I had a CMG once a month for 12 months after implantation.
In October of 1989, I stopped using the wheelchair in the house. Eventually
I stopped using the wheelchair completely. That was the wrong thing to do
as it limited what I would do. In may of 1993, I went to a trade show in
Las Vegas with my ex. Walking around was getting to me, so I got a
wheelchair. After that, I decided that I would be able to go more places.
So, in January, 1994, I went to Vegas by myself to see a friend from back
home who was vacationing there.. I can't tell you the freedom I felt, even
though it was in a wheelchair.
The medication greatly reduced the spasms and stopped the pain. I was also
able to stop wearing DIAPERS after 17 years. Yes, I still have a little
leakage now and then and if I don't pay attention I have a accident. I do a
self cath if I am going out some where as I have a residual in my bladder
and do not want any more UTI's. I used to take 80mg orally of Baclofen, I
now get 1.2 mg./ day—50 ug/hour.
In April of 1995, my ex and I separated. I had been on Paxil for a year and
a half. I was put on it because I was told I had depression. I wasn't
"depressed", but I took the medication to make everyone happy. HA!-- I
didn't know what depression was. After I moved out, I slowly tapered off
the Paxil. I hit the bottom of the barrel. On July 6, I had an appointment
with my internist, my primary care doctor whom I have known for 9 years.
When he came into his office and asked me what was going on, I started
crying and did not stop the whole time I was there.
BINGO!!!__DEPRESSION!!!!! I told him I wanted to be put into the hospital
and have a complete checkup. I did not want to do it as an outpatient. He
told me he would have to put me in the Behavioral Health Ward to get me
into the hospital. I told him I did not care. I wanted to have tests run.
The next day, I met with a psychiatrist. I cried through most of the 1 ½
hour interview. When he finished he told be I was manic-depressive. I
thought that meant that I was a lunatic and would end up in the state
hospital. After I settled down, I went down the hall just looking around. I
went into one room andhanging on the wall was a paper listing some people
who had been either in depression or manic- depressive. The first person on
the list was Abraham Lincoln. Others were Edgar Allen Poe, Edna St. Vincent
Millay, Mozart, Beethoven, Mike Wallace, Art Buchwald………
Hey, I'm not a lunatic, I'm in a group of well-known people.
I made 7 visits to "Club Med" between July 1995 and April 1996. The
vacations were to get mediation adjustments or changes. I also spent 10
weeks in a day program to learn what I had and how to deal with it. I have
learned a lot and one of the major things that I learned about depression
is that the outside world does not understand what it is. I did not when I
was first told. I am now on Wellbutrin and Depakote.
In September 1996, I went for a sleep study. I learned on the internet that
sleep apnea could cause depression. I remembered that my ex had told me
that I would stop breathing sometimes when I was sleeping. The doctor I had
had spent 13 years at Columbia and was an Associate Professor at the
University of Arizona. I was diagnosed with Restless Leg Syndrome.
When I would get in a very relaxed state, my left leg would start to spasm.
I always thought that it was due to TM. Yes., the infusion pump reduced the
severity, but did not completely stop them. After trying a couple of
different medications, I am able to go to bed and get in a relaxed state
without spasms occurring.
My brain was not going to sleep. It would wake up bout every 90 seconds,
but I would not remember it.
It also helped with the depression as my brain was not going into REM sleep
which is when serotonin is made. I even started to dream
These are some of the things I have been told or learned:
1. Dr. Hermann said that 95% of pain in people is caused by tight muscle.
He also said that some people who take medication orally by the time it
gets through the liver and blood brain barrier about 5% may be left.
2. A UTI will cause spasms. Also regarding the bladder, the rate at which
the urine goes into the bladder will have an effect on spasms. At a fast
rate, spasms will occur before the bladder is full. Spasms may not occur if
the rate is slow. The moral of this story is do not drink anything with
alcohol. I can state this from experience! I did not know this before the
CMG and I always thought a glass or two of wine in the evening would help
settle the spasms down. I WAS WRONG!
3. Dr.John Vivian, a urologist, frequently stated, "Bladder and bowel,
bowel and bladder"
(I can relate to this as eating too much Mexican food will cause
spasms i.e. gas)
4. "Laughter is the best medicine!" When I was having the CMG's, I would
watch the graphs of 8 of the electrodes. The activity would
increase if I quieted down and would lessen if I would start talking or
moving around a little. I also had a cousin who was diagnosed with
Hodgkin's Disease when she was 16. She lived for 17 years with it. She was
always in a joking mood and I believe that that is what kept her going.
5. Using a wheelchair will give you more freedom and tire you out less. It
will also give you some aerobic exercise.
6. The infusion pump for Baclofen has been successful for me. I cannot
state that it will help everyone, but it is something to be looked at
depending on the individuals circumstances. It is like any medication. Some
people will respond and some will not. The procedure to have a trial to see
if the pump will possibly work has been changed from what I went through. I
believe it is only the injection of the Baclofen into the spinal column to
see if the person responds, but I am not sure. One would have to see a
doctor regarding the procedure. I am on my second pump. The first one
lasted almost 5 years. It is because of the battery which lasts 3 to 5
years depending on how the pump is programmed.
7. Depression is nothing to be ashamed of. It is like being a diabetic.
One is lacking a chemical in the brain. Education is the best way to a
recovery. One does not have to cry to have depression. There are other
things that are symptoms of depression. If you feel you might have
depression, check out Depression Central on the internet.
8. I have been to some of the top doctors in the country. I have also had
some idiots. If you do not feel comfortable talking to your doctor, get rid
of him/her. You need to be able to communicate. Keep a pad of paper around
the house to make notes or questions on so that the next time you go to the
doctor you can tell him what has been happening or if you want to ask him
something, you won't forget.
9. DO NOT EVER GIVE UP! Yes, there are times you will feel like it, but
keep busy and you can do it.