skull candy
skull candy

I had an MRI of my brain performed several days ago, September 25. I’ve been reluctant to report the results of that, because… well, because I don’t actually know yet what they mean. My primary care doc has referred me to neurology so they could “explain it to me.”

Uh oh. Red flag #1.

At least three things were found significant enough by the radiologist to include them on the written report summary:

1) Progressing severe chronic microangiopathy without acute infarct.
2) Stable ecstasia distal left vertebral artery causing mass effect upon the medulla, as described above.
3) Acute left maxillary sinusitis.

Or, as my doctor wrote, “in simpler term,”

1) You have vascular changes that are progressing, my suggestion to follow with neurology so that they can guide you as what to do.
2) Also I am concerned about stable changes in the left vertebral artry, which is pressing on to the medulla part of the brain, especially with a history that you gave that you get dizzy when you extend your neck. I want neurology to explain this to you.
3) You are found to have acute sinusitis in your left maxilla. I am sending Augmentin to you pharmacy along with probiotic.

When I called neurology, I was told they are booking new patients into January 2021! BUT… fortunately there is a new doctor in the practice who can see me October 28, if I want to see him.

Until I see the neurologist in a few weeks, I can only wait. Unless, of course, I choose to consult with Dr. Google immediately, which I have done. In a nutshell, all roads with the first finding (note the word “severe”) lead to dementia.

I’ll be honest, I’m a little scared. I think I’d rather lose an arm, a leg and both of my testicles than to lose my mind, but of course, that probably just means I haven’t advanced very far. Yet.

I have a history of neurocognitive disorders, with brain MRIs performed in 2006 and 2012. They found some mild changes, but nothing as serious as this. I’ve seen neurologists in Chicago and Kansas City. I had two neuropsych evaluations performed those years; the first one found me qualified me for disability, the second one declared I was just a tick shy of being a genius.

Hell, one HIV specialist diagnostic me with early onset HIV-associated dementia in 2004 or 05, but every other doctor I’ve seen thought he was the crazy one.

I am noticing all kinds of symptoms. Forgetfulness. Difficulty composing my thoughts. Trouble finding the right word or name. Sleeping like the dead. Depression and despair and determination to continue to resist and live the best life I possibly can. I want people to remember that I died living, not as a puddle of melted neurons and synapses.

I have been sitting on this for days, trying to decide what, if anything, to make public. I do not have a diagnosis, and perhaps all my concerns are misguided. If so, then this post will be about the waiting that is driving me crazy. But I have always made my journey with HIV and AIDS a public story. I considered blogging again, and indeed, that is what I’m doing here. Maintaining a blog is beyond my interest, if not my ability anymore.

Michael and I were in the process of planning some very significant changes in our lives and our lifestyle. We were/are planning to leave the country and finish our lives with our last big adventure being outside the USA. Now everything is on hold.

I’ve been on this ride before, and the one thing I think I know is that regardless of what I learn on the 28th, I will leave that doctor’s office with even more questions than before.

The question now being: how long is resistance fruitful? How far do I allow myself to travel down this rabbit hole?  What will I do differently, depending on what I hear from another medical specialist, in this case, the neurologist?  How long do I continue to fight for health, rather than simply keep on living until I stop?

Finally! A free pass for being crazy?

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