The problem is, of course, that they really don't know
what causes TM. It could be that some of your meds
triggered something. My neuro thought it was
"interesting" that my problems started after I had
gone through chemo for breast cancer. As far as the
docs wanting to blame everything on HIV, I had the
same problem with having had cancer. The immediate
diagnosis when I was hospitalized was that the cancer
had metastized to the base of the brain. They ended
up doing a biopsy of the site, which ruled out cancer
and confirmed myelitis. Without the history of breast
cancer, they would have immediately headed in other
directions.
Sorry you had a bad lumbar puncture. I have had more
than I can count, and only had that happen once.
Excrutiating pain. The neurosurgeon said that that is
what a collapsed disk feels like. Remind me not to
have one. My poor husband was waiting outside my room
when it happened - I guess the scream was pretty loud.
Most of the time the taps are uncomfortable, but not
really painful. I just hate them on general
principle.
By the way - we are neighbors, sort-of. I am about 25
miles south of you on the coast - just above Half Moon
Bay.
Keep us posted on what's happening - Ann
--- joralemon <joralemon(AT)email.msn.com> wrote:
> I would like the following posted to your message
> board.
>
> 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 event
> 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.
>
>
>
>
>
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