> ----------
> From: AZMAINIAC[SMTP:AZMAINIAC(AT)prodigy.net]
> Sent: Monday, October 20, 1997 7:43 PM
> To: Transverse Myelitis
> Subject: NEW SUBCRIBER
>
> 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.
>
>