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.
I am so sorry that you’re going through this, the lack of support from your family just breaks my heart. As another commenter posted, I also thought you were a woman because, well, frankly that’s how the medical industry treats women. Don’t let these dismissive doctors gaslight you into believing you’re fine, you live in your body and know when something is wrong. You deserve to be heard and deserve to receive proper treatment. My advice for you would be to take a supportive person with you, if that’s not an option then take a list of all your symptoms and try to keep it is as “factual” as possible with information like dates, severity of symptom (ex 1-5 range) duration and any as possible, since you’ve taken anti-anxiety medication it’s going to be a bit of an uphill battle since 90% of doctors will immediately dismiss your concerns as anxiety 😤. So when that happens, counter with, my emotional state is stable I’m here for physical issues that are distressing and deeply impacting my quality of life. Ask questions, I have already worked on my anxiety and pursued treatment, it’s not that, this is what I have tried , it has not eased my symptoms so what else can be? What do I do if the symptoms get worse during a flare up? What kind of treatments should I pursue? Can you please update my chart to include the treatments I have pursued? And as hard as it can be be straightforward, something like, I understand you are busy, I feel like you are not listening me as a patient, can you provide me a clear plan to address this or can you refer me to someone who can?
Others have great suggestions, but I’ll take a different approach with some practical advice that came to mind. These are just ideas, so feel free to workshop it or to dismiss it entirely.
Advocating for yourself in person can be really difficult. I’m quite a people pleaser, so I know how it feels to go into a situation with an idea of what you want to say and leave feeling disappointed that you didn’t stick up for yourself. You seem like you’re fighting an uphill battle with your age and the doctors’ previous responses.
I think you’re a pretty decent writer. I really felt for you as I read this post, and I can tell that you’ve struggled. The doctor that you want treating you will be someone who is moved in the same way and will care about you enough to get to the bottom of this.
I think you should change the main text of this post into an email template that you can address to different doctors. Maybe add a blurb about only wanting to be their patient if they’re willing to treat the things you say with trust and validity. Then, start sending it to doctors/neurologists around you. If those don’t get a response, then expand your range. You might have to travel or make some life changes to get the treatment you need.
Hopefully you’ll get some responses. From those responses, you could gauge how you feel about each doctor. For the ones that seem like they genuinely want to help, you can visit their office and get an appointment. Don’t treat going to an appointment as a commitment. You’re shopping around to get the best treatment for yourself.
Hopefully yet again, you’ll find a doctor that feels like they’ve got your back and is willing to take you on as a patient because they really care about you, not because you’re just another “customer” of the healthcare business.
Ask for help even though it might be scary. You’ve already done that here with this post, and I of course don’t know whether you’ve done it elsewhere. If you haven’t done it on more personal forms of social media like Facebook or Instagram, then try there. People are usually more motivated to help if it’s someone they know that is suffering. Even if you haven’t talked to most of the people on there in many years, people will still read it, and some of those people might know something that could help you.
Depending on how comfortable you feel on those platforms, you can reach out in a vulnerable way like this post or you can keep it more practical by just asking for doctor suggestions. Also, if you want to hide the post from certain people (maybe your parents), you can do that pretty easily on Facebook with the “post audience” option.
I hate that you’ve gone through all this suffering, and it should NOT be this difficult to find a good doctor. The system here in the US is really horrible to navigate and inhumane. I’m sure doing all of this would be exhausting, but if it gets you what you need, then I think it’s worth it.
In addition to what others have said, do you maybe have a close, local friend that does understand you? If so, you could maybe go together to the doctor and they could make sure that you properly advocate for yourself. There’s no shame in getting this kind of support, it’s kinda time-critical that you get this health issue sorted as well as possible, don’t necessarily want to wait until you are able to be persistent by yourself. We humans are meant to face struggles together.
That’s not helpful of course if you don’t have someone like this, but I thought I’d mention it.
Thanks for the suggestion, but unfortunately no, I don’t have local friends. My POTS makes it hard for me to be out and about for long periods of time (I get lightheadedness and brain fog after just a few minutes of standing).
I try to be the best friend I can be to myself and live life in the moment. I tell myself that how proud I am of myself and that it’s okay to be scared or sad. When nobody else will tell me these things and when I feel so dehumanized and isolated, I try to treat myself with warmth and compassion where none exists.
I feel grateful that I had the chance to experience life at all. I got to experience so many amazing things - incredible video games, a fulfilling programming hobby, and the cutest of cat pictures. I always wanted to live my life building cool and interesting projects, and I’ve already built a website that well over 100,000 people used, solved problems that nobody else had before, and got my work featured in several videos on YouTube by people I considered celebrities. I shouldn’t be ashamed if a health problem I can’t control cuts my life short, because I did the best I could and kicked major ass while doing so.
I think of the YouTube creators I really enjoyed whose lives were tragically cut short in their 20s. Talented, entertaining, and charismatic individuals who continued their passions and shined brightly until the very end. I think the most humane existence I can give myself, for however much time I have left, is to keep doing what I love too, for as long as I still can.
Sorry to hear of your struggle. Like others already suggested, keeping a diary with your symptoms can help the diagnostic proces. However the symptoms you list are difficult to pinpoint to one specific neurological problem, assuming you already had an MRI of your head, an EMG and a lumbar puncture.
In my experience doctors can sometimes be very good at what they do, but very bad communicators. The way you can best stand up for yourself is to prepare your visit. Write down the questions that you have. It helps if you can clearly articulate what it is that you want from them. But allow yourself some time to think about this question first. Sometimes, what you need has more to do with being taken seriously, or being reassured nothing bad is going on than having a diagnosis. Keep in mind that although modern medicine has come a long way, we still know very little of the intricate processes of the body. Maybe there isn’t a know diagnosis yet that explains your symptoms. This doesn’t mean that your symptoms aren’t real, they absolutely are! A good doctor should in this case be honest and tell you that they just don’t know, and they are out of testing options. If this is the case they should however try to help you manage your symptoms and get your life back on track. Lastly, consider that there are a set of psychosomatic disorders that can give real physical symptoms, but they should only be considered if other diseases are ruled out first. Read up on them, but don’t let a doctor suggest it without having properly gone through the diagnostic process.
I wish you the best of luck and hope you get better!
