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.
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.
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.
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.
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!
Never forget you matter. Pain takes away our humanity. I believe you. You will find those around you can’t understand, because if they did, the lack of empathy would be so hard for them to accept. You will show empathy in a way others will never understand. Its your gift. I have severe daily pain from a motorcycle accident. 20 years later and i finally am getting out of pain my stretching. I never finished my PT and have had severe atrophy. i accepted never walking away with out pain. never breathing with out pain. that is now not something i have to keep accepting. I feel like i am breaking out of a concrete mold. each step is just as painful as the step before, but its a step forward. It took two into my recovery and i am feeling like a new person. im kind of a cool guy when not chasing away pain. I hope you find your way to pain free. never give up. life is long. Sorry for your pain my friend. I love you.
If you are feeling better, now is the time to have a correct diagnosis. You don’t know if everything goes to shit again, who may end to be on charge of your health. Don’t despair, change doctors until you find someone that takes you seriously.
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.
Can I ask if you’re a woman? The reason I bring that up is how completely dismissive multiple people are of your symptoms. Many women report having that specific reaction, but few men do.
Even if it is “just a pinched nerve”, that’s not a small, ignorable issue. It needs proper medical treatment, or you can suffer greatly from it. Not just from nerve damage, but from whatever is causing the pinch.
I won’t speak to what actual medical condition you might have, but your doctors should be helping you dig into that. You can research potential conditions to discuss with them. An engaged patient might spur them into action. It also helps to give them some ideas if you have something more rare (or not presenting in a common way)
You also probably need to find new doctors. You mentioned that your PCP is on your side, which is a good start. Ask them for more recommendations, particularly for the reason that you are feeling ignored. Also, don’t dismiss the ones that are actually doing tests- I know it’s frustrating that they aren’t finding anything, but they are at least ruling out possibilities. At 21, you really should not have chronic/debilitating illness without a real diagnosis.
(Side note: back surgery is more invasive and life-changing than you would think. Please don’t take that option lightly)
I’m a man, though I suspect my young age and anxiety led to people labeling me as “just another teenager with health anxiety,” which undermined my position, despite how impossibly difficult it was to remain stoic.
As for my parents, that’s generally because I have toxic relationships with them and they are extremely hesitant to consider anything I think and believe. For example, despite my vehement disagreement, they told me that if I got vaccinated for COVID, they would kick me out onto the streets even though I had no financial footing and was struggling with my condition. Having no car or daily routine that would make it feasible for me to get vaccinated behind their backs, I eventually contracted the Delta variant and was forced to endure the full infection. I now have chronic cough.
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.
Man what a scary experience to have gone through.
I want to say, good on you for looking after yourself and seeking care, especially when it feels like you havent been supported. Sometimes the people around us dont understand or dont get it right. You help just by speaking up. Truly.
Doctors often give advice / trial a therapy amd if you dont go back, they assume you got better. If it aint working out, go back and say so. You should get taken seriously, and Im sorry if that hasnt been your experience.
Amongst other things, Facial droop and pupil dilation can be a big deal and should have sparked a comprehensive exam. A herniated disc at C7/T1 does not cause those issues. It is not always necessary to operate on a herniated disc, but should it come to it, it is now microsurgery, quite a bit safer and less invasive. However this is typically done when other approaches have failed. It provides more immediate relief, but outcomes are similar surgical v non-surgical after 12 months. I suspect this will not be the route you need to go.
I am with the previous commenter, follow up with your concerns!
Unfortunately alls I can give you is more uncertainty. My wife has a multitude of issues that we try to get through but one that is floating above us is a very similar back problem. We are old enough to have experienced insurance roulete and when she was young she was in a car accident where a semi accordioned the car she was in. She has issues with both lower and upper spine but at this point we don’t really see any real solution besides fusion. Which we have seen enough issues around that such that we want to avoid it until its just to bad to ignore. So basically as long as she is not in a wheel chair we likely won’t go that direction. She sometimes gets pain shots and out of some desperation she gets chiropractic (insurance will pay for unlimited chiro but limits physical therapy). We get by because we are sinks where I am the bread winner. She can do things in moderation but generally she can’t sit or stand in on position very long and when she does things she is on this clock where if its kept down to an hour she might be okay but if it goes to two there will be repercussions and if its many hours then it can lay her up for days. Essentially she is quasi bed bound where to stay functional she must be in bed more often than not through out the day. Sorry this is not more helpful but maybe it will make you feel a bit better in terms of other people do face issues like this.
As someone who went through something similar, on an empathetic level, this terrifies me enough that I am compelled to ask, what country do you live in? No country should be this bad at diagnosing MS.
United States.
What state?
Ohio, not too far from Columbus.
Alright, that explains it. I’d definitely recommend getting a second opinion from a place that cares so you have a control group. Preferably one with the power to pressure the medical staff you know. It doesn’t even sound like the people near you did proper tests.
Thanks for the advice.
They did give me an MRI of my brain and spinal cord a couple years ago when the symptoms started developing, and nothing showed up, so maybe there just isn’t enough resolution to detect what I have. I’m not sure what else they could do besides a lumbar puncture and a more up-to-date MRI scan…
Just out of curiosity, can you name all your symptoms you’ve ever had, even the ones you don’t connect to the possible condition?
I wish I had an answer for you. I too have had doctors and family dismiss my symptoms, when I’ve been at the most acute suffering.
I was 35, and called my father to drive me to the ER because I was in so much pain. He acted as if I was faking it all for attention. His response came out of nowhere. I have never faked anything for attention, not as a child or as an adult. Then out of the blue he just decides I must be faking it for attention, at the age of 35. As a result of my father expressing this opinion while I was in the ER, I didn’t get treatment. As a result of non-treatment, I now have permanent neurological complications that will follow me for the rest of my life. There was a limited treatment window, and we missed it, because Dad decided I was faking it.
I called him instead of getting an Uber, because I thought his presence would help. Now I can never trust him again. I’ve stopped listing him as my emergency contact, because I don’t trust him to make useful decisions for my medical care.
I don’t know how or why, but there is a part of my father that wants me to suffer horribly. I have no idea why. But now that I’ve seen it I can’t truT him.
There is some horrible trance of unconsciousness that has descended over American doctors. If they see something outside of their circle of mastery, something that evokes uncertainty, they simply cannot handle it and they reject the perception. They reject evidence. They reject responsibility.
I don’t have much in the way of advice. I’m just writing to say that I don’t think you’re crazy, and I hear you, and if you happen to be in the Denver area I will go with you to your doctor’s appointments and advocate for you. Two voices are better than one when it comes to forcing people to avoid self-delusion.
My only other thought would be maybe try doctors outside of the USA. I don’t know but I have a hunch doctors outside the US might not be so caught up in the trance of unconsciousness.
Or, if you’re in the Denver area, please reply to this comment with some contact info and I’ll get in touch with you and act as your advocate any time you have doctor’s appointments.
This so something humans do sometimes. When one of them is suffering, the others around him turn a blind eye toward it. They look, but they don’t see.
This is an old story, and it is one of the darkest things about humanity. And nobody understands it. Nobody even believes it exists, except those to whom it has happened.
Now that it has happened to you, you can no longer ignore it, and you are now one of the few that is aware that this happens. By this, I mean the willful ignorance that is springing up all around you.
In fact, even if you’re not in the denver area, let me help you find a patient advocate. Patient advocacy is the system we have to counter this trance effect. Another aspect of humanity’s quirky psychology is that two voices get 1000x further than one voice when it comes to such things.
You need a patient advocate. I will either act as that advocate, or I will help you find a patient advocate in your area.
Trouble is, I don’t know if there’s any way to DM me your phone number. Just reply to this comment and we’ll figure out a way to get in touch.
