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?
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.