Aa
M.S. and HIV
I'm a MS patient, a gay MS patient. Because I'm gay HIV is a scary truth. What if I contract HIV, what may happen?
Yes, some of the Scare Tactics used in public school education are a bit too "Risk Adverse." I'm not sure about the statistics of incidence in the DC metro area, but the risk of transmission can be greatly reduced with minimal effort.
Anyhow, it seems your doctors are excluding many of the causes (including HIV) through the typical testing. Most of us have gone though this. I had pain in my left arm for two years that the knew was not due to peripheral nerve damage (negative EMG,) but no one ever suspected it was MS until I went blind in one eye. Sometime, it take just one more thing to get the docs headed in the correct direction.
Hang in there. As they narrow in on a possible neurologic disease, that may lead to an understanding of an organic cause for your depression. One of my docs feels that my adult onset ADD may be related to my MS. Sorry it takes time, but it sound like your docs are at least crossing the mimics off the list.
By the way, glad you are negative on the HIV front.
Bob
Anyhow, it seems your doctors are excluding many of the causes (including HIV) through the typical testing. Most of us have gone though this. I had pain in my left arm for two years that the knew was not due to peripheral nerve damage (negative EMG,) but no one ever suspected it was MS until I went blind in one eye. Sometime, it take just one more thing to get the docs headed in the correct direction.
Hang in there. As they narrow in on a possible neurologic disease, that may lead to an understanding of an organic cause for your depression. One of my docs feels that my adult onset ADD may be related to my MS. Sorry it takes time, but it sound like your docs are at least crossing the mimics off the list.
By the way, glad you are negative on the HIV front.
Bob
Bob,
I understand where you're coming from from a rational perspective; yes, we all know to play "safe." But that stated, I was born in 1978 and was in school throughout the AIDS crisis, and it was drilled into us that there is no such thing as "safe." So even when protected, sex always feels like a risk. And given that I live in Washington, D.C., where one in three gay/bi men is positive and one in ten heterosexual adults is positive, sexual activity simply feels like Russian roulette. Given the statistics, and given that I've only met a small handful of men who admit to being HIV+, it's hard to ever feel secure simply because of playing "safe."
Fortunately (?), I'm on two antidepressants which have effectively rendered me neuter. And I'm negative as of two days ago, so all I need to worry about now is that pesky double vision, tingling, pain, imbalance, and occasional half-dead left leg. Yay! :D
I understand where you're coming from from a rational perspective; yes, we all know to play "safe." But that stated, I was born in 1978 and was in school throughout the AIDS crisis, and it was drilled into us that there is no such thing as "safe." So even when protected, sex always feels like a risk. And given that I live in Washington, D.C., where one in three gay/bi men is positive and one in ten heterosexual adults is positive, sexual activity simply feels like Russian roulette. Given the statistics, and given that I've only met a small handful of men who admit to being HIV+, it's hard to ever feel secure simply because of playing "safe."
Fortunately (?), I'm on two antidepressants which have effectively rendered me neuter. And I'm negative as of two days ago, so all I need to worry about now is that pesky double vision, tingling, pain, imbalance, and occasional half-dead left leg. Yay! :D
HIV is an infection. ARC and AIDS are the symptomatic breakdown of the immune system as a result of HIV (the Acquired Immune Deficiency Syndrome and the AIDS Related Complex.) Cytomegalovirus (HHV) and some of the other things that go along with AIDS can mimic MS when present in the brain.
I guess I can say this as a 49 year old gay man, but "Why are you worried since we all know to play safe?" I am of that generation that watched huge portions of the gay population "die off." I was in Oakland in the Mid to Late 1980's. Not a pretty sight. Today, so many of the teens and early 20's crowd are "Well, I'll sero-convert, get on meds and just get on with it." I don't get it.
I have been safe and just as a matter of habit have been tested every year since 1990 (something about combat and field transfusions...) It is just better to know your status and know how to keep it negative.
When I got sick with MS, HIV was at the bottom of my list concerns and there was no surprise when the neuro listed HIV, Syphilis, and CMV as negative.
Bob
I guess I can say this as a 49 year old gay man, but "Why are you worried since we all know to play safe?" I am of that generation that watched huge portions of the gay population "die off." I was in Oakland in the Mid to Late 1980's. Not a pretty sight. Today, so many of the teens and early 20's crowd are "Well, I'll sero-convert, get on meds and just get on with it." I don't get it.
I have been safe and just as a matter of habit have been tested every year since 1990 (something about combat and field transfusions...) It is just better to know your status and know how to keep it negative.
When I got sick with MS, HIV was at the bottom of my list concerns and there was no surprise when the neuro listed HIV, Syphilis, and CMV as negative.
Bob
As usual, Lulu is right on top of things and zeros in on points that often escape me. Her request for more information got me thinking and I'm not sure I can make sense of the info you read about.
I'm no expert on HIV but my understanding is that HIV status isn't dependent on any symptoms being present at all. Isn't that why it's important to get tested after high risk contacts of any sort? Also, I believe it can be a very long uneventful trip between HIV+ status and full-blown (symptomatic) AIDS. That's why Magic Johnson "looks so good" after 20 years that people begin to doubt his HIV+ status or think he's been cured (that's still a NO-not possible, by the way).
I'd try to relax a little RL. What is is, whatever IT is. A little worry can make us careful. Too much worry can add symptoms but never improves a thing. "MS-like symptoms" covers a very, very big territory of possibilities since the symptoms vary so from person to person. They can seem like anything and everything. Yet as it turns out, they often aren't even very helpful in diagnosing MS!
One thing is clear. Your symptoms say you are feeling bad and functioning even worse. Now you are in the dreaded no-man's land called waiting. It's a very difficult place to sit quietly. I hope you get some answers soon. I'm glad you found this place where we can wait with you.
Mary
I'm no expert on HIV but my understanding is that HIV status isn't dependent on any symptoms being present at all. Isn't that why it's important to get tested after high risk contacts of any sort? Also, I believe it can be a very long uneventful trip between HIV+ status and full-blown (symptomatic) AIDS. That's why Magic Johnson "looks so good" after 20 years that people begin to doubt his HIV+ status or think he's been cured (that's still a NO-not possible, by the way).
I'd try to relax a little RL. What is is, whatever IT is. A little worry can make us careful. Too much worry can add symptoms but never improves a thing. "MS-like symptoms" covers a very, very big territory of possibilities since the symptoms vary so from person to person. They can seem like anything and everything. Yet as it turns out, they often aren't even very helpful in diagnosing MS!
One thing is clear. Your symptoms say you are feeling bad and functioning even worse. Now you are in the dreaded no-man's land called waiting. It's a very difficult place to sit quietly. I hope you get some answers soon. I'm glad you found this place where we can wait with you.
Mary
Hi artistlike,
Unfortunately we have not seen adamjames beyond the first couple times he posted. I dod wish he would come back and give us an update.
As for your situation - now you really know why the internet can be a dangerous place to look for information .... I haven't researched the connection between HIV and MS but please be sure the sources you are looking at are reputable and reliable. There is a lot of garbage out there on the web.
Can you give us the sources (url's) for the places you found with the cross referenced link?
I hope you can find more information that will put your worries to rest for a while.
best, L
Unfortunately we have not seen adamjames beyond the first couple times he posted. I dod wish he would come back and give us an update.
As for your situation - now you really know why the internet can be a dangerous place to look for information .... I haven't researched the connection between HIV and MS but please be sure the sources you are looking at are reputable and reliable. There is a lot of garbage out there on the web.
Can you give us the sources (url's) for the places you found with the cross referenced link?
I hope you can find more information that will put your worries to rest for a while.
best, L
Hi AdamJames25,
I'm a 33-year-old gay man and I share your concerns. HIV has been the monster looming overhead my whole adult life. Last year, I began to develop MS-like symptoms, went through a battery of tests, and all were negative. The tests included blood tests, including (negative).
Over the past several weeks, all the MS-like symptoms have returned, but worse than before, including double vision and a weak left leg that actually gave out on me today on a subway escalator that was out of order (scary!!). That was on the way to the doctor. I'm awaiting the results of my HIV test, along with all the other blood work, and I had four MRIs (brain, C, T, L) prescribed. Last year's MRIs showed no signs of lesions.
Anyway, I've been in a panic over this since it started back up, but in Googling HIV and MS, I found several articles stating that MS-like symptoms have been shown in recent studies to appear in people who initially test HIV-negative, but then end up testing positive within 20-40 months afterward (!!!). So now I'm really petrified waiting for my results.
I realize this isn't helpful, but I can really empathize with your concerns.
I'm a 33-year-old gay man and I share your concerns. HIV has been the monster looming overhead my whole adult life. Last year, I began to develop MS-like symptoms, went through a battery of tests, and all were negative. The tests included blood tests, including (negative).
Over the past several weeks, all the MS-like symptoms have returned, but worse than before, including double vision and a weak left leg that actually gave out on me today on a subway escalator that was out of order (scary!!). That was on the way to the doctor. I'm awaiting the results of my HIV test, along with all the other blood work, and I had four MRIs (brain, C, T, L) prescribed. Last year's MRIs showed no signs of lesions.
Anyway, I've been in a panic over this since it started back up, but in Googling HIV and MS, I found several articles stating that MS-like symptoms have been shown in recent studies to appear in people who initially test HIV-negative, but then end up testing positive within 20-40 months afterward (!!!). So now I'm really petrified waiting for my results.
I realize this isn't helpful, but I can really empathize with your concerns.
Hi Adam,
Like in the medical profession, you should assume that everyone is infected with HIV - so you should always use protection.
You should try to protect your health. MS is already a big disease to try to live with, and anything else on top of that just creates more of a burden for you and your body (and probably your finances).
In MS, I believe a certain part of your immune system is overactive. If you have HIV, I think that you would still take the same types of DMDs, immunomodulatory treatments, as anyone else living with MS, even though HIV reduces your immune system. Of course, both are considered autoimmune diseases.
Feel free to ask us questions about things related to your MS....
-Kelly
Like in the medical profession, you should assume that everyone is infected with HIV - so you should always use protection.
You should try to protect your health. MS is already a big disease to try to live with, and anything else on top of that just creates more of a burden for you and your body (and probably your finances).
In MS, I believe a certain part of your immune system is overactive. If you have HIV, I think that you would still take the same types of DMDs, immunomodulatory treatments, as anyone else living with MS, even though HIV reduces your immune system. Of course, both are considered autoimmune diseases.
Feel free to ask us questions about things related to your MS....
-Kelly
Hi there,
Welcome to our forum. Gay or not, everyone run the risk of contracting HIV. However, medicine has changed the sad statistics and the potential for AIDS.
Magic Johnson comes to mind - what an inspiration. There are so many others who have benefited from treatment so they can live their lives to the fullest.
Like Ess alludes to protecting yourself from infection and viruses is key for anyone, but especially for those w/auto immune diseases. If you are, then you'll worry less because you've done what you can. If you are concerned because of a slip up - get tested asap.
What if's can make your mind spin, so one thing at a time, AdamJ. Treat your MS. Are you on a DMD?
I know you'll find our forum useful and supportive. Ask anything, it's why we are here.
-Shell
Welcome to our forum. Gay or not, everyone run the risk of contracting HIV. However, medicine has changed the sad statistics and the potential for AIDS.
Magic Johnson comes to mind - what an inspiration. There are so many others who have benefited from treatment so they can live their lives to the fullest.
Like Ess alludes to protecting yourself from infection and viruses is key for anyone, but especially for those w/auto immune diseases. If you are, then you'll worry less because you've done what you can. If you are concerned because of a slip up - get tested asap.
What if's can make your mind spin, so one thing at a time, AdamJ. Treat your MS. Are you on a DMD?
I know you'll find our forum useful and supportive. Ask anything, it's why we are here.
-Shell
Hi and welcome.
HIV is scary no matter what, so I can only encourage you to do everything possible to prevent it. Make sure none of your relationships are with infected individuals.
Should you get full blown AIDS, your body would have a tough time fighting off infections and you'd be on a great many expensive medications. How that would affect your MS status is unpredictable, but it would place a tough burden on your immune system.
Those with MS do not have compromised immune systems and are not more likely than others to become infected (with amything), so that's not the problem, as it is with HIV. Our problem is that our immune systems often can go on a rampage against ourselves, with the bad outcomes we all know and hate.
The best thing for us is to give our immune systems as little material as possible to work with, and that means avoiding potential sources of infection, such as the flu. Vaccinations are important.
I hope this has helped.
ess
HIV is scary no matter what, so I can only encourage you to do everything possible to prevent it. Make sure none of your relationships are with infected individuals.
Should you get full blown AIDS, your body would have a tough time fighting off infections and you'd be on a great many expensive medications. How that would affect your MS status is unpredictable, but it would place a tough burden on your immune system.
Those with MS do not have compromised immune systems and are not more likely than others to become infected (with amything), so that's not the problem, as it is with HIV. Our problem is that our immune systems often can go on a rampage against ourselves, with the bad outcomes we all know and hate.
The best thing for us is to give our immune systems as little material as possible to work with, and that means avoiding potential sources of infection, such as the flu. Vaccinations are important.
I hope this has helped.
ess
It is odd to have our posters call themselves "patient"s.
If you contact HIV along with MS, you will be a gay man with HIV along with MS.
On our board, we are not interested in your sexuality and preference. We are here to addressed the MonSter...MS.
If you contact HIV along with MS, you will be a gay man with HIV along with MS.
On our board, we are not interested in your sexuality and preference. We are here to addressed the MonSter...MS.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
