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?
So just tell them very confidently that you think the problem is deeper than that and you want some more tests to rule out anything. “Better safe than sorry especially with the spine” is what I’d use. And if they put up more of a fight, just keep pushing. Ask them directly to order the test, in this case an MRI, or refer you to someone who can.
Also I’d suggest seeing an immunologist because you aren’t having normal issues, this sounds a lot like MS or something similar (worst case scenario might be SMA). An immunologist would help rule out anything autoimmune that could be causing this. An 18-21 yo male should not be having any of these issues without something else underlying imo.
All the advice in the other comments is great. Advocate for yourself and don’t give up. Find people who can support you.
As someone that has struggled with mysterious issues as well, I just wanted to say that you’re not exaggerating or over reacting and you’re not alone. You’re doing your best to find help but the system is not working the way it should. Your family is supposed to support you. Your doctors are supposed to work to find a good diagnosis and relieve your symptoms. If they aren’t doing that you will need to do even more work yourself, which sucks. Push them when you can, and if they still aren’t responsive find a different doctor. I know it’s hard, and exhausting, and expensive. But you have your whole life ahead of you, it’s 100% worth it to get this figured out now.
Hi, I have a mystery disease that has stumped 7 doctors so far. I have no overlap with your problems medically, but the fear of your last sentence is a very valid and real concern. The person that helped me the most was actually a nurse practitioner (in the us, not sure if thats a thing other places). Id recommend seeking treatment for the symptoms at first, and the once you find a dr that actually helps THEN i would ask them what next steps they recommend.
Also find a way to tell someone your medical history in under two-five minutes, doctors all have atention span issues. Heres mine if it helps
“I stopped feeling hunger when i was 17, waited on that for about 10 years as it didnt seem like a big deal, now Im constantly nauseous and in pain” you can also add on what youve tried, but that should also show up on your medical records from past drs.
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.
Sometimes keeping a symptom journal or diary can help your medical providers piece things together. They are only seeing you once for 10-30 minutes, but you’re living in your body and experiencing symptoms way more frequently. Don’t log obsessively, but maybe once a day review your pain (rated 1-5) and write down any noteworthy symptoms or episodes. And as someone else mentioned, get good at condensing your medical “story” to date, including your current symptoms.
Doctors will always go for the simplest explanation, even if it’s wrong. This is how they are trained (in the west, anyway). So don’t give up! Continue insisting on a proper diagnosis. Get another opinion. See a different specialist. If you find it difficult to advocate for yourself, imagine if this was your friend. How many mountains would move to get the same answers for a dear friend? And apply that logic and compassion to yourself. Have a bestie come with you to appointments if they are willing to.
A big part of the “suck” in this process is the not knowing. Will you be in pain forever? Will you get better? Will you get worse? Is it really a mystery illness? Will you ever get a diagnosis? With chronic pain you’ll find yourself exhausted often with the effort required to ignore the pain. So feel the pain sometimes. Lean into it. You may find it’s a relief to feel it instead of trying to block it out.
It’s maybe also worth accepting that these issues may never totally resolve. If they do, great. But what if they don’t? How can you live a happy and fulfilling life (which millions of people do with chronic pain/disability) even if it stays the same?
Lastly, I want to say that you have a separate problem, which is the lack of social support you are getting from your family. They are gaslighting you about your illness - of course you know your body best and are experiencing what you say you are. You are young and may depend on them financially, so that’s a needle you have to thread. But I’d encourage you to spend more time with friends who love and believe you.
If you have access, it’s worth working with a therapist on all of this. From what you’ve described, you have been left all alone to grapple with a disability that no one can even explain. That is an awful lot for someone to hold by themselves. Whatever happens with your illness, I hope you are able to get the love and support you deserve - which may never be offered by your family.
