Transverse Myelitis Internet Club List: [TMIC] TM and HIV Disease

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For the last year or so I have been a voyeur to your site. From what I =
see, there aren=92t 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=92t 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.=20

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=92t diggested anything =
during the day.=20

The next day, Monday, I had an appointment with my therapist at one =
o=92clock. 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=92t had a bowel =
movement or urinated for about three days. I didn=92t 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.=20

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=92t know exactly what it was. But when I told them I was HIV =
positive, they immediately started talking about CMV or PML.

Now, I=92m 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=92t want to take a =
battery of drugs that may do me more harm than good.=20

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.=20

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).=20

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.=20

Sexually, I was completely impotent and even though that has faded with =
time sex just isn=92t what it used to be. In the beginning I couldn=92t =
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=92t 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 =96 =
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=92m wondering how it will react with TM?=20

So that=92s my story. I wish all of you well event though I don=92t 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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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,=20 there aren’t any other people that fall into my particular niche. = I am a=20 gay African American man in his forties living with HIV disease in San=20 Francisco. Last year I came down with Transverse Myletis, a disease I=20 hadn’t heard about until its onset.

I wanted to write something about my experience because there may be = more=20 people out there like me and maybe they will not find it as difficult or = as=20 isolating having these two diseases. I suspect that there are at least a = few=20 people with TM and HIV.

That said here is my story:

I remember the exact moment I felt the effects of Transverse Myletis. = It=20 happened a week before last Labor Day. I was on my way from my office on = Monday=20 afternoon. The day before I did the laundry and ate something during the = day.=20 That night, after returning from the laudramat, I took a rest on my = couch and=20 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=20 I hadn’t diggested anything during the day.

The next day, Monday, I had an appointment with my therapist at one=20 o’clock. As I left my job, I remember feeling a small pain in my = lower=20 back. I was carrying my brief case and thought that it had caused a = muscle=20 spasm. By the time I got to my car across the parking lot, a pain was = emanating=20 down the front of my left leg, then my right leg. By the time I got = across town,=20 I could hardly stand the pain.

I kept my appointment and told my therapist about the pain I was = having. He=20 said it sounded like a touch of sciatica. When I left an hour later, I = could=20 barely walk because of the pain. For the rest of that week, my = conditioned=20 worsened daily. I made an appointment with my doctor to see her after = the=20 holiday, but by the weekend I couldn't walk. I was on some painkillers = and=20 thought it would all go away if I could just rest a little. There were = other=20 problems as well. I hadn’t had a bowel movement or urinated for = about=20 three days. I didn’t have a fever or anything body aches but I = sure felt=20 bad. Finally, that Thursday or Friday, I called my doctor and she said I = should=20 go to the emergency room immediately.

I waited for my partner to get home from work. (I am a gay person and = have=20 been in a stable relationship for much of the past eighteen years now). = I could=20 barely walk down the stairs from my house. When we got to the hospital, = I was=20 placed on a gurney. I remember the intern said that it seemed like I had = an=20 extreme case of back pain and that I was probably going to need an = immediate=20 operation on my spine. My partner dismissed his diagnosis as guesswork. = In any=20 case, the first thing they did was to put a cateter in my penis and = drain my=20 bladder. That caused me a great deal of relief. After waiting about a = half an=20 hour, they took me in for a MRI. They scanned every thing from the top = of my=20 head to halfway down my spine. Just when I thought I was finished, they = took me=20 in again. The had found something on my spine about half way down. They=20 didn’t know exactly what it was. But when I told them I was HIV = positive,=20 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=20 survivor. I was diagnosed as HIV positive in 1987 and have gone through = years of=20 problems with HIV. Unfortunately, it has been my experience that medical = people=20 tend to over estimate the effects of HIV and do a lot of guessing when = they find=20 out you are HIV positive, even here in San Francisco. Anyway, when the = doctor=20 wanted to immediately put me on anti-CMV drugs, I asked her what the=20 "B" answer was. I told her and the other docs that until they = came up=20 with a more difinitive diagnosis based on the results of some kind of = tests, I=20 didn’t want to take a battery of drugs that may do me more harm = than good.=20

So they ordered a spinal tap. That was the first one I had. First = they had=20 problems finding a gap in my spine. They tried several times before the = needle=20 would go in. When it did, I felt the most excrutiating pain I have felt = in my=20 life for about two minutes. I could feel the nerve from the middle of my = back to=20 the top of my big toe on my right leg. It felt like a toothache only in = my leg.=20 The results of this ordeal was that they found only slightly elevated = proteins=20 in my cerebral spinal fluid.

I spent the next three days in the hospital. The first day I just = about=20 paralized from my waist down. The second day, I could actually stand up, = which=20 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=20 home. I talked with my doctor who had returned from Holiday. I asked her = what=20 her diagnosis was, and she told me she believed that I had a case of = Transverse=20 Myelitis. I had never heard of TM before that day. I asked her if it was = an HIV=20 OI (Opportunistic Infection, like PCP, CMV, PML or KS). She said no, = that the=20 HIV could have contributed to it but that it is just one of those = diseases that=20 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=20 be careful of incontinence. For two weeks I had to catheterize myself. = Then I=20 had to get pills to stop me from urinating 5 times a night. Unfortnately = I had a=20 couple of bouts of incontinence at inconvenient times and places. My = legs hurt=20 all the time. The bottom of my feet felt numb then like they were on = fire. The=20 back of my legs and my buttocks were both numb most of the time. This = took=20 months to get over.

Sexually, I was completely impotent and even though that has faded = with time=20 sex just isn’t what it used to be. In the beginning I = couldn’t feel=20 anything in the top of my penis. Even though that has faded, sex still = is not as=20 gratifying as it used to be.

One of the most difficult things for me with TM is how to deal with = it and=20 HIV. I found your board while surfing for information. As I read through = some of=20 the letters, I didn’t see any from people like myself, people with = TM and=20 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=20 first version of what we call the cocktail – 3TC, d4T and = Crixivan, a=20 protease inhibitor. Now my doctor wants to switch to another cocktail = inlcuding=20 Combivir, Sustiva, DDI and Norvil. Since Sustiva crosses the Blood Brain = Barrier=20 and is known to have psychiatric side effects, I’m wondering how = it will=20 react with TM?

So that’s my story. I wish all of you well event though I = don’t=20 know you. I will try to update you from time to time and would = appreciate any=20 other person with HIV disease or African-Americans to get in touch with = me.