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

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=20 see, there aren’t any other people that fall into my = particular niche.=20 I am a gay African American man in his forties living with HIV = disease in=20 San 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=20 Monday afternoon. The day before I did the laundry and ate something = during=20 the day. That night, after returning from the laudramat, I took a = rest on my=20 couch and woke up in the evening, went to the bathroom and vomited. = I=20 noticed that everything I had eaten that day including breakfast = went out of=20 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=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=20 emanating down the front of my left leg, then my right leg. By the = time I=20 got across town, I could hardly stand the pain.

I kept my appointment and told my therapist about the pain I was = having.=20 He said it sounded like a touch of sciatica. When I left an hour = later, I=20 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=20 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.=20 There were other problems as well. I hadn’t had a bowel = movement or=20 urinated for about three days. I didn’t have a fever or = anything body=20 aches but I sure felt bad. Finally, that Thursday or Friday, I = called my=20 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=20 have been in a stable relationship for much of the past eighteen = years now).=20 I could barely walk down the stairs from my house. When we got to = the=20 hospital, I was placed on a gurney. I remember the intern said that = it=20 seemed like I had an extreme case of back pain and that I was = probably going=20 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=20 cateter in my penis and drain my bladder. That caused me a great = deal of=20 relief. After waiting about a half an hour, they took me in for a = MRI. They=20 scanned every thing from the top of my head to halfway down my = spine. Just=20 when I thought I was finished, they took me in again. The had found=20 something on my spine about half way down. They didn’t know = exactly=20 what it was. But when I told them I was HIV positive, they = immediately=20 started talking about CMV or PML.

Now, I’m not only a person living with HIV but I am also a=20 long-term survivor. I was diagnosed as HIV positive in 1987 and have = gone=20 through years of problems with HIV. Unfortunately, it has been my = experience=20 that medical people tend to over estimate the effects of HIV and do = a lot of=20 guessing when they find out you are HIV positive, even here in San=20 Francisco. Anyway, when the doctor wanted to immediately put me on = anti-CMV=20 drugs, I asked her what the "B" answer was. I told her and = the=20 other docs that until they came up with a more difinitive diagnosis = based on=20 the results of some kind of tests, I didn’t want to take a = battery of=20 drugs that may do me more harm than good.

So they ordered a spinal tap. That was the first one I had. First = they=20 had problems finding a gap in my spine. They tried several times = before the=20 needle would go in. When it did, I felt the most excrutiating pain I = have=20 felt in my life for about two minutes. I could feel the nerve from = the=20 middle of my back to the top of my big toe on my right leg. It felt = like a=20 toothache only in my leg. The results of this ordeal was that they = found=20 only slightly elevated proteins 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,=20 which amazed just about everybody, me included. By the third day I = could=20 walk, although with some effort. The forth day, the day after Labor = Day,=20 they sent me home. I talked with my doctor who had returned from = Holiday. I=20 asked her what her diagnosis was, and she told me she believed that = I had a=20 case of Transverse Myelitis. I had never heard of TM before that = day. I=20 asked her if it was an HIV OI (Opportunistic Infection, like PCP, = CMV, PML=20 or KS). She said no, that the HIV could have contributed to it but = that it=20 is just one of those diseases that can happen to people in their = forties. (I=20 had just turned 45 in June).

Over the past year I have slowly recuperated. At first I had to=20 particularly be careful of incontinence. For two weeks I had to = catheterize=20 myself. Then I had to get pills to stop me from urinating 5 times a = night.=20 Unfortnately I had a couple of bouts of incontinence at inconvenient = times=20 and places. My legs hurt all the time. The bottom of my feet felt = numb then=20 like they were on fire. The back of my legs and my buttocks were = both numb=20 most of the time. This took months to get over.

Sexually, I was completely impotent and even though that has = faded with=20 time sex just isn’t what it used to be. In the beginning I=20 couldn’t feel anything in the top of my penis. Even though = that has=20 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=20 and HIV. I found your board while surfing for information. As I read = through=20 some of the letters, I didn’t see any from people like myself, = people=20 with TM and HIV. One of my complications is that people with HIV = disease=20 must take a regiment of drugs, many of which are experimental. At = the time I=20 was on the first version of what we call the cocktail – 3TC, = d4T and=20 Crixivan, a protease inhibitor. Now my doctor wants to switch to = another=20 cocktail inlcuding Combivir, Sustiva, DDI and Norvil. Since Sustiva = crosses=20 the Blood Brain Barrier and is known to have psychiatric side = effects,=20 I’m wondering how it will react with TM?

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