Not open for further replies.


Sep 29, 2017
Small Town
Neurology is a very fine field of diagnosis. My respects to the those in the field. My actual diagnosis is HIV Associated Vacuolar Myelopathy. It runs nearly the same course of ALS, but is a bit faster. It's been over three decades of being HIV positive. I held fast and hard in keeping my health together. I was blindsided by this diagnosis. It was confirmed.

It's been a crazy ride, but I had a good life. Being so rare and so fast, I don't really feel I have any support (not to mention the sociological). I'm fortunate to be a veteran and do have benefits that may help me. I'm working on that now through the Paralyzed Veterans of America. It's not over until it's over. I'm trying hard to keep a positive attitude.

My speech, swallowing, urination and other issue are the worst. I don't have neuropathy, but I do have significant neurological manifestations. Pain consumes me.

I feel very alone, but I can only imagine how many people feel the same.

Being a typecast person is very hard. I not only have to work through the system of medicine, but I have to work through the systemic hatred of simply being HIV positive. People with ALS get empathy, I get judged. It's a different world altogether. I'm not allowed to talk about it. It bottles me up.

I didn't choose any of this. I'll be hated no matter what and will struggle twice as hard to get things handled. All I want is to die peacefully. I have empathy and sympathy for anyone going through what we do.

Sometimes I feel I will have to kill myself before someone else does. I don't know what to do. Somehow others feel it is their duly responsibility to make my life harder because they prejudge me. I don't know what I am going to do. I don't want to suffer any more.

I want to go home. I just want to die.
I am so sorry for your new diagnosis. It sounds like you've had quite shocking news. Managing HIV for 3 decades is an admirable feat. I know how much work goes into keeping yourself well when you have a complex and chronic disease like HIV.

My question to you is, do you have a local Poz support group? You need support from people who understand the rarer issues that arise from being HIV positive and who can provide resources specific to your needs. You're right, there can be a stigma attached (and total ignorance), but you have a right to receive appropriate and compassionate care- and there are many organizations who do provide it with no judgement and much respect.

Your profile says Maryland- there are many such groups listed when I did a quick search.

Once again, I am so sorry.
Last edited:
After all these decades of HIV, I really don't need the support. I've got a great deal of love in my life, I'm just really grasping at this diagnosis. It came out of left corner. I expected to live a normal life for the most part. For all these years being HIV positive, the stigma never went away. Sure, it was really rough back in the 80's, but people are people and I understand their fears. Things are a bit better today. The fear is being trashed and treated like garbage in my most needy time. I won't have control over those taking care of me when I can't function. Am I going to be mistreated? My past history of medical treatment says yes. I've been very mistreated by the medical establishment and I fear it. I feel I am going to die in abject pain and or hurt intentionally. Medical abuse is a very real thing. Look at the data coming from nursing homes. I don't want that. It scares me more than anything.
Labrador, I don’t judge you. I sympathize with your journey and your pain. I apologize for any medical personnel and others who may have mistreated you. You are a human being and worthy of the respect and kindness deserved by any human being. I wish you peace and comfort. I hope others will wish the same for you.

Nobody has the right to judge you. You are as worthy of good medical care as anyone else in this Country. I've lost friends to HIV in the 80s and, yes, I know some people judged them. I was raised to treat everyone equally and those who don't get purged from my life.

I'm so sorry you are in pain. You should never be mistreated for any reason. I'm so sorry this happened to you.

Your medical providers need to give you something to address the pain. There is no excuse for withholding pain medication from someone who has a terminal illness or even a chronic illness.

Do you have someone who can be your medical advocate?
Labrador, my heart goes out to you. I probably can't even imagine how exhausting this must be for you. I hope for you to find pain treatment that is effective and considerate. You are a fighter or you wouldn't be here today. I wish you lots if strength and good support!
Labrador, I hope PVA can help you with VA benefits.

Do you have a Facebook presence so others can learn about your situation and possibly help?
Thank you for the responses! There is an emotional component to this that comes and goes. It comes out of the blue. I kept telling my psychiatrist I wasn't depressed. I kept telling her over and over that I thought something was wrong with me "organically" in the mental dept. Turns out I was right. When I posted, I was having a mild moment of psychosis. My normal self would not have sounded so hysterical.

I'm working really hard at ensuring I die on my own terms and that means at home. I'm very fortunate to have the veterans benefits I do and I think things will work out. The V.A. has introduced new streamlined programs to get us through the system faster. My VSO is the Paralyzed Veterans of America and the said they generally get the paperwork approved within a couple weeks. I do realize that from that perspective, I am more fortunate than many whom have posted their stories here.

I have been a fighter all these years, but I also knew that at some point my health would catch up to me. It seems we are really never prepared for the next step. There are some strong people out there as evidenced again on this site.

There was a brave soul that posted their journey (the same one I am going through) on youtube. It gave me a great deal of hope. That person was diagnosed HIV in 2002, then diagnosed with the Vacuolar Myelopathy in 2011. He stopped posting videos, but still has presence on Facebook. He defied the odds. There is always hope. I'm not all doom and gloom.

Thanks again for your understanding and concern. I'm sure I will continue to be around and post my updates. This is really the only place I can find and relate to others.
I’d love for you to keep us in the loop with periodic updates. Best of luck to you Labrador.
My thoughts are with you, Labrador.

Take good care.

Thoughts and prayers, Labrador.
Very good to read your second post here, Labrador! I knew you wouldn't give up that easy. Your body might betray you eventually, but your mind is strong. Remembering that you had very dark days and bounced back could make some dark days to come more bearable. This too shall pass and it will.
Living and dying on your own terms, I second that motion!

When I was a foster parent a just a few years ago we were responsible for making all of our foster childrens' medical decisions/meeting their medical needs... with the exception of an H.I.V. test--- we were reminded repeatedly that *that* would require a court order from a judge. Given all the other equally if not more significant medical tests/procedures often on the table it was pretty clear to me this was more of a reflection of the social stigma still remaining... and I was surprised and saddened. It's not right.

Sadie, I'm just glad there are people like you out there. Thank you! It's a rough world. Keep your strength and no, it's not right.
Thank you to all those heartfelt comments. It really means a great deal to me. You have no idea.
Not open for further replies.