I'm sorry if this post is a bit too long or emotional, but I would really appreciate if someone read it and told me their thoughts. I feel very isolated in my experiences, and I would really appreciate being heard.
I was 18 years old when I made the worst decision of my entire life.
I used to work at a restaurant, and developed worsening upper back pain. I stupidly pushed through it, thinking it wasn't too big of a deal. One day when I was working, my arms went nearly limp in an instant, and I could barely move them. I went home early, and my parents told me it wasn't a big deal. I was freaked out, but weakness subsided after a week.
Although not taken until much later, an MRI scan would later reveal a herniated spinal disc at vertebrae C7-T1 making contact with my spinal cord. This event set the stage for the horrors that awaited me.
Whenever I bent my neck over too far or lifted a heavy object, I would have a dull pain in the location of the herniated disc, indicating pressure in the area. One day later, I would get a surge of neurological pain and sensations across my entire body. At first, it was localized to my arms and legs, but then it spread to everywhere else below my neck. These flare-ups were very painful and distressing, and lasted for weeks at a time, before dying down to some minimum constant level of pain.
My parents told me it was no big deal, probably just pinched nerves. Then for class one day, I looked down for 2 hours to take an exam. And one day later, it took over my entire body.
Now, even my face and head were in pain and having random muscle twitches, I developed POTS, I had pain and flashes in my eyes, and my vision became permanently darker. I felt random acceleration, my pupils were rapidly growing and shrinking, I had to pee every 5 seconds, one side of my face began drooping, my throat was twitching, I felt like I had to throw up constantly, and I developed tremors.
Desperate to hold on to this less terrifying pinched nerve theory, I discovered a harrowing implication: the nerves that innervate the face, eyes and vestibular system are attached to the brainstem, not the spinal cord.
I sought medical treatment immediately. All of my vitamin levels checked, all common diseases checked for, like Lyme disease, even more obscure metrics like copper levels. All normal. I finally got to see a neurologist, and he told me it was just small-fiber neuropathy. I asked him about the other issues I had like visual disturbances, the sudden onset of POTS I had just gotten diagnosed with, and the muscle movements (small-fiber is supposed to be sensory and unrelated to spinal injury). He simply waved those away and said that might be something unrelated, despite the fact that it all happened right after I bent my neck and I was completely healthy before all of this. I saw another neurologist, who told me to just listen to the first one.
A spine specialist told me that the spinal cord "still has room to move around," with regards to the herniated disc being in contact with it, but the fact that pressure there corresponded with a neurological explosion of symptoms the next day, every time and without fail, seems VERY suspicious to me. My PCP also mentioned it as something concerning.
One time, I had an episode of confusion and could barely move my arms and legs, so I went to the emergency room. After waiting 15 hours, they told me to just go home.
Meanwhile, my parents told me I was overexaggerating and my dad even told me I was making it all up for attention. Having gotten extensive tests and being dismissed by doctors and everyone around me for months on end, I just gave up and accepted the outcome, even if it meant death. I had developed extreme anxiety as a result of watching my body's systems failing every day, so my PCP offered anti-anxiety pills. I took them and tried to forget about everything, telling myself that everything will probably be okay if I just never bend my neck the wrong way ever again. Obviously, not the greatest long-term strategy, but I wanted to return to some semblance of sanity. It was an extremely horrifying and painful experience for months on end, filled with feelings of dread, horror, and betrayal, and I was just so tired at this point.
I am now 21 years old and it has been over 2 years since this all began. Most of my symptoms died down to a low level, but I still occasionally get a new one. (Now, I also suffer from loud auditory hallucinations and my breathing randomly stopping when trying to sleep.) It seems that the progression hasn't stopped, only slowed significantly, since I haven't gotten another flare-up yet.
Considering that I'm not dead yet, I started wondering if I still have a chance to turn this around, maybe at least get surgery to move the disc out of the way. But considering how badly things went 2 years ago, it feels like a very tall order. How do I ensure that doctors look into the issue more instead of giving me an unfitting diagnosis and dismissing the wider context?
In addition to what most people have said DO NOT STOP PUSHING THE ISSUE. To you it's life ruining and potentially life ENDING. To the idiots you dealt with "it's just some kid experiencing back pain for the first time". Additionally by backing down they perceive themselves as being correct.
This will suck but you really have to "bitch and whine" to high heaven to get these dense morons to listen to you. At the very least it might get them to seek treatment just to shut you up.
DO NOT GIVE UP, your adult self would kill you if you stopped fighting for treatment so keep pursuing it. If a doctor refuses you just have to find another. If you can afford it, a therapist would give you much greater empathy and some possible paths to help find a doctor who gives a shit and will try their best to actually help you.
I'm not giving up, but I've also been making peace with death in the process.
All of my symptoms seem to be traceable back to one hypothesis: the brainstem, where the majority of nerve signals from the body converge, has been compromised. Progressive damage is causing it to send incorrect signals, resulting in random pain and symptoms over nearly every surface and system in my entire body, as well as the gradual breakdown of my autonomic systems, such as unconscious breathing and regulating bloodflow when standing. Unfortunately, every new symptom that happens only reinforces this theory, with many of the explanations for them being brainstem or cranial nerve damage. Sufficient damage to the brainstem is known to result in death, and brain damage itself isn't directly fixable. All of this has led me to believe that this has a fairly high chance of being terminal with no medical recourse. Not 100%, but high enough that I cannot ignore it. The writing is on the wall.
Instead of pretending everything is going to be okay, I have chosen to accept this possibility and enjoy the time I have remaining. I can't control when I die, but I can control how I react to it, and I want my final days to be peaceful and nostalgic, rather than horrifying and distressing. And hey, if I survive for longer than expected, I'll take it.
Society has already failed me. Capitalism made me push through the pain that led to my injury, and the medical system gave me the middle finger. I was one of the few young people who slipped through the cracks. It's very sad, but it happens. I hope that after I'm gone, people continue to push for a better world and develop the technology to finally diagnose and rectify damage to individual neurons, so nobody will ever have to experience what I went through, and go on to live happy and healthy lives.