Hi everyone. I'm now over 5 years into a journey to find out what mystery brain illness I have. It began suddenly in June 2016 with a virus or flu-like illness of some kind. The first symptom started when I woke up feeling ill and headed off to college. Then when I tried to do my college work on a computer, I was shocked to find that I could barely even think up and type a single sentence because a sudden cognitive deficit I had. I was no longer able to use my working memory and recall under any kind of time constraints. My brain would just hurt and strain itself endlessly if I tried to force my brain to think faster than it was able to. Though I can still write coherently like I'm doing here if I remain patient and give my brain all the time it needs to think. Note that this symptom is very different from your typical "brain fog" many speak of, which seems to affect memory and cause actual forgetfullness, as opposed to just delayed recall on command like in my case (which can seem like forgetfulness but really isn't).
Since then, that symptom has only kept getting worse and affected other mental faculties the same way. It eventually progressed to anhedonia (again, as a result of my brain physically straining itself to process emotions, this has nothing to do with depression). Over the years I've been ill with this, many other health issues gradually set it and worsened including a continuous headache (which are more of a burning, nagging feeling around the head rather than an actual headache, like if your cranium was filled with battery acid or paint stripper), vision field problems, insomnia (which randomly comes and goes), horrible head feelings (hard to put into words, a flu-like feeling that only affects the head), a worsening state of lethargy, heart rhythm issues (bigeminy and SVT attacks), muscle degradation and weight loss.
Everything I've tried in terms of food, activity, suppliments, nootropics and medications has had zero effect at all on my brain symptoms the entire time, feels basically like perminent brain damage and I've almost given up trying else like this as I just know that nothing will happen. I also kept a symptom diary for a while but it proved useless to me as nothing ever changed with my illness, other than it slowly worsening with time. Nothing has ever moved the needle with this in 5 years and I really hope my time finally comes when something will.
I've had very little help from doctors, who have mostly being trying to say that I don't really have a medical condition, yet I haven't had much done besides a basic blood panel (total blood count, liver, kidneys, thyroid etc) and CT/MRI scans my my brain. The doctor I seen initially about this called it Post-Viral Fatigue (before running any tests, just assumed), then changed it to ME. And most recently, I seen a neurologist who tried to say it was a functional neurologist disorder and that my symptoms were "somatic". I'm getting really tired of my condition being treated as if it's some big medical mystery to doctors, when very little has been done to take it seriously and investigate it from the very start, and the problem seems more straightforward than other more complex cases of chronic illness I hear of and had an obvious viral/infectious trigger.
Currently, Im going to see another neurologist privately in the UK who specialises in post-viral disorders, so I'm hoping that he could run some of the right tests and investigations I probably should have been getting long before now. I strongly suspect that autoimmune causes may be the culprit with this and could well have some form of autoimmune encephalitis.
There are cases when brain fog (although not the best term to use in my case) desparately needs medical attention to be fixed and I think it's safe to say that this is one of them. I just hope that after 5 years of nothing but decline and degradation, I finally get some answers.
Edited by SeanQHX1, 30 September 2021 - 03:39 PM.
