Dear People:
For the last year or so I have been a voyeur to your site. From what I see,
there aren t any other people that fall into my particular niche. I am a
gay African American man in his forties living with HIV disease in San
Francisco. Last year I came down with Transverse Myletis, a disease I hadn
t heard about until its onset.
I wanted to write something about my experience because there may be more
people out there like me and maybe they will not find it as difficult or as
isolating having these two diseases. I suspect that there are at least a
few people with TM and HIV.
That said here is my story:
I remember the exact moment I felt the effects of Transverse Myletis. It
happened a week before last Labor Day. I was on my way from my office on
Monday afternoon. The day before I did the laundry and ate something during
the day. That night, after returning from the laudramat, I took a rest on
my couch and woke up in the evening, went to the bathroom and vomited. I
noticed that everything I had eaten that day including breakfast went out
of me. It was like I hadn t diggested anything during the day.
The next day, Monday, I had an appointment with my therapist at one o
clock. As I left my job, I remember feeling a small pain in my lower back.
I was carrying my brief case and thought that it had caused a muscle spasm.
By the time I got to my car across the parking lot, a pain was emanating
down the front of my left leg, then my right leg. By the time I got across
town, I could hardly stand the pain.
I kept my appointment and told my therapist about the pain I was having. He
said it sounded like a touch of sciatica. When I left an hour later, I
could barely walk because of the pain. For the rest of that week, my
conditioned worsened daily. I made an appointment with my doctor to see her
after the holiday, but by the weekend I couldn't walk. I was on some
painkillers and thought it would all go away if I could just rest a little.
There were other problems as well. I hadn t had a bowel movement or
urinated for about three days. I didn t have a fever or anything body aches
but I sure felt bad. Finally, that Thursday or Friday, I called my doctor
and she said I should go to the emergency room immediately.
I waited for my partner to get home from work. (I am a gay person and have
been in a stable relationship for much of the past eighteen years now). I
could barely walk down the stairs from my house. When we got to the
hospital, I was placed on a gurney. I remember the intern said that it
seemed like I had an extreme case of back pain and that I was probably
going to need an immediate operation on my spine. My partner dismissed his
diagnosis as guesswork. In any case, the first thing they did was to put a
cateter in my penis and drain my bladder. That caused me a great deal of
relief. After waiting about a half an hour, they took me in for a MRI. They
scanned every thing from the top of my head to halfway down my spine. Just
when I thought I was finished, they took me in again. The had found
something on my spine about half way down. They didn t know exactly what it
was. But when I told them I was HIV positive, they immediately started
talking about CMV or PML.
Now, I m not only a person living with HIV but I am also a long-term
survivor. I was diagnosed as HIV positive in 1987 and have gone through
years of problems with HIV. Unfortunately, it has been my experience that
medical people tend to over estimate the effects of HIV and do a lot of
guessing when they find out you are HIV positive, even here in San
Francisco. Anyway, when the doctor wanted to immediately put me on anti-CMV
drugs, I asked her what the "B" answer was. I told her and the other docs
that until they came up with a more difinitive diagnosis based on the
results of some kind of tests, I didn t want to take a battery of drugs
that may do me more harm than good.
So they ordered a spinal tap. That was the first one I had. First they had
problems finding a gap in my spine. They tried several times before the
needle would go in. When it did, I felt the most excrutiating pain I have
felt in my life for about two minutes. I could feel the nerve from the
middle of my back to the top of my big toe on my right leg. It felt like a
toothache only in my leg. The results of this ordeal was that they found
only slightly elevated proteins in my cerebral spinal fluid.
I spent the next three days in the hospital. The first day I just about
paralized from my waist down. The second day, I could actually stand up,
which amazed just about everybody, me included. By the third day I could
walk, although with some effort. The forth day, the day after Labor Day,
they sent me home. I talked with my doctor who had returned from Holiday. I
asked her what her diagnosis was, and she told me she believed that I had a
case of Transverse Myelitis. I had never heard of TM before that day. I
asked her if it was an HIV OI (Opportunistic Infection, like PCP, CMV, PML
or KS). She said no, that the HIV could have contributed to it but that it
is just one of those diseases that can happen to people in their forties.
(I had just turned 45 in June).
Over the past year I have slowly recuperated. At first I had to
particularly be careful of incontinence. For two weeks I had to catheterize
myself. Then I had to get pills to stop me from urinating 5 times a night.
Unfortnately I had a couple of bouts of incontinence at inconvenient times
and places. My legs hurt all the time. The bottom of my feet felt numb then
like they were on fire. The back of my legs and my buttocks were both numb
most of the time. This took months to get over.
Sexually, I was completely impotent and even though that has faded with
time sex just isn t what it used to be. In the beginning I couldn t feel
anything in the top of my penis. Even though that has faded, sex still is
not as gratifying as it used to be.
One of the most difficult things for me with TM is how to deal with it and
HIV. I found your board while surfing for information. As I read through
some of the letters, I didn t see any from people like myself, people with
TM and HIV. One of my complications is that people with HIV disease must
take a regiment of drugs, many of which are experimental. At the time I was
on the first version of what we call the cocktail 3TC, d4T and Crixivan, a
protease inhibitor. Now my doctor wants to switch to another cocktail
inlcuding Combivir, Sustiva, DDI and Norvil. Since Sustiva crosses the
Blood Brain Barrier and is known to have psychiatric side effects, I m
wondering how it will react with TM?
So that s my story. I wish all of you well even though I don t know you. I
will try to update you from time to time and would appreciate any other
person with HIV disease or African-Americans to get in touch with me.