Giant essay for context (1 / 2)
You make an excellent point; specialists would be able to give a more definitive answer, and I mustn’t get complacent just because I have accepted this outcome. On the contrary, I think my chance of diagnosis is better this time around. The only issue is, I have to wait for literal months to talk to a neurologist and get more tests.
I have to consider the risk: do I wait for months - that I might not have - to go through the medical system again, and risk leaving almost nothing behind if they don’t catch this in time? Or, do I set this up now, while still doing everything I can to get medical help, knowing that if it’s indeed terminal, I won’t regret the decision I made? I want a lot of time to write about all sorts of things.
My last neurologist ignored half of my symptoms and it took half a year for him to fully rule out his theory, after which point he said there was nothing he could do. He only focused on the full-body pain when I was having vision and heart rate problems at the time and my symptoms were progressing quickly. He diagnosed me with small-fiber neuropathy, which does not explain the pattern of attacks I have, the vision damage, motor symptoms, and it definitely doesn’t explain the cognitive and breathing issues I have now. He did eventually diagnose me with POTS (very fast heartbeat when standing), but that was just one comorbidity out of the sea of unaddressed symptoms. I waited months for a second opinion, and all she told me was to just listen to the first neurologist.
Now that my symptoms have significantly progressed again, I think I have a better chance of getting a real diagnosis, not just identifying my comorbidities (e.g. POTS, neuropathy). The tests you mentioned were two years ago at this point, so it’s possible that a new MRI will finally be clear enough to show damage. The problem is that, again, it will take a long time to verify a diagnosis, and that’s only if it can be verified; it might be too tricky, for reasons I’m about to go into.
The only faster way appears to be the emergency room, and they don’t take too kindly to me being there if I’m not literally hours from death. I had an attack where I could barely move my arms and legs at all for 2 days, and they immediately sent me home even then. This has led me to the conclusion that the emergency room will not see me until I’m already in irreversibly critical condition. Even if I was diagnosed then, it would be too late for me to leave anything behind.
I didn’t go into more details about my condition because I didn’t want to bore people, but I’ll describe it here, because it’s so unusual that I don’t know if doctors will be able to diagnose it in time, and indeed, this might be a big factor as to why I haven’t been diagnosed yet.
It all started when I was working at a restaurant and I was pushing through severe upper back pain (which I developed from overworking myself). Suddenly my arms became weak and numb, and an MRI later would show a herniated disc in the C7-T1 area. This was very scary, but after a week I was back to normal… or so I thought. This is where the weirdness begins. It all started with tingling in my hands. Then it turned into random pain. As I worked more and more, eventually, the pain suddenly jumped, spreading to not only my arms, but also my legs and feet. This is when I knew something very wrong was happening to me. I quit my job in hopes of avoiding further progression.
A couple months later, after carrying something heavy downstairs to help my disabled father, I felt a dull pain in the back of my neck where the disc was. I ignored it, thinking it would wear off. The next day, my nerve pain erupted all over my arms and legs again, but it had also spread to my face and the back of my head. I was in a panic at this point, and my primary care provider informed me that a neurologist would be a 6-month wait.
One thing that brought me comfort was the idea that I just had pinched nerves, according to my mother. I looked up the spinal nerves and the regions that they innervated and thought “Wow, I must have a lot of pinched nerves, but it makes sense since my muscles are in so much pain and I was working so hard.” Applying this logic to the pain I had now would nonsensically imply that nerves directly attached to the brain were somehow being “pinched,” specifically the cranial nerves that innervate the face, branching out from the brainstem. In other words, the pinched nerve theory was wrong. This realization was terrifying and I tried to ignore it, thinking that I just didn’t have enough context. Surely it wasn’t actually in my brain, right? I’m just overreacting! Everything will be fine!
A couple months later, I was taking an exam for college. I was looking straight down for 2 hours, and that familiar dull pain in my neck was back. I dreaded what was to come next. Sure enough, exactly one day later, the nerve pain flared up and spread… to nearly my entire body. Arms, legs, hands, feet, stomach, groin, face, head, neck, even the eyes. They were all in pain nearly constantly. The pinched nerve theory made no sense anymore. Every single nerve root, including some in the cranium, from bending my neck? All comfort was out of the window. This would start a wave of progression that would last for several months.
One day, there was a dull pain in the back of my eyes and my vision suddenly blurred, and nothing I did made it go away. I was panicking from barely being able to see anything. Periodically, the blur would fade in and out, until it stopped. Later that day, I noticed that my vision had gotten darker. It never improved. At this point, I had a new theory: my central nervous system was being attacked by my immune system due to inflammation from the the disc injury. Three weeks prior, I had read about optic neuritis, a condition that causes the blurring and darkening of vision, often leaving permanent damage over the same timeframe. It is closely associated with autoimmune disease. I believed that it could happen to me, and I was correct. However, I did not believe the disease was multiple sclerosis due to the involvement of the disc; there was no record of a physical injury causing MS disease activity. The disease would continue, causing my heart rate to beat insanely fast from just standing (POTS), and making me feel like I had to pee every single minute.
Finally, I got the chance to see some doctors. The neurologists I mentioned earlier didn’t help much, besides confirming that I had POTS. I also managed to convince some ER doctors to give me MRIs, which helped in identifying that this is unlikely to be a purely mechanical problem:
- My new PCP told me that the herniated disc was “touching” the spinal cord and was very suspicious, especially given its link to my symptom progression.
- A spine specialist told me that the disc was not severe enough to cause the symptoms I was having, and that something else must be causing them.
This suggests that the herniated disc is in close proximity to, and at some points may be in contact with, the spinal cord, but would not cause these symptoms on its own. What nonmechanical process could cause such widespread symptoms in reaction to weird things happening in the body? The immune system.
At this point, I knew that anywhere could be fair game. It was horrifying to think about. Among my most harrowing thoughts was the idea that my breathing could become compromised. But maybe I will be fine, I thought.
So, I just went ahead and wrote out basically everything in this comment chain. Most of what I described of my disease before has been a simplification because it’s too complicated to describe in a simple post, but some people had concerns, so I finally described it in detail. I had previously left out a lot of details pertaining to progression and the fact that most of the early disease activity correlates with physical events surrounding a herniated spinal disc, before increasingly going rogue and progressing all on its own. A couple of doctors gave me some good insights, but the disease is still largely mysterious.
Don’t worry; I’m not planning on doing anything drastic. The urgency is moreso a desire to have peace of mind that everything I write will be published. The passage of time makes me feel uneasy now because my disease is now touching vital functions. Most people assume they will wake up the next day, but I feel like I can’t fully make that assumption anymore. I want to secure my ability to leave a legacy. Once I do, the stakes won’t be so high; I can be more at peace with the situation and won’t have to worry about the odds.
I’m very unlikely to die tomorrow or this week. I will most likely survive for a bit longer, perhaps a few months or so. This writing thing is a long-term process, more of a retirement activity that I work on every day rather than something I do all at once. I just feel like the odds of survival each day are closer to 499 in 500 rather than 99,999 in 100,000. The true odds are, of course, unknowable, so I am forced to work off of intuition.
I am still seeking a diagnosis. I’m currently pursuing a sleep study, visit with a neuro-opthalmalogist, and a visit with a new neurologist so I can have fresh eyes on this disease in light of the new evidence. I’m hoping that there is enough progression now that the damage will be radiologically significant. The problem is that I am still months away from them, and I don’t know how long it will take to finally get a full diagnosis, so I want to prepare for the worst ahead of time so I can leave behind a large collection of art and things I’ve made. But I agree with you that there is always a chance that this is survivable; I just cannot know right now. The chaotic breathing is quite concerning, steering me towards accepting the worst outcomes. But I am by no means giving up.
The bottom line is that the only time I can guarantee exists is now, with the probability of each subsequent second existing following a gradual exponential decay curve that we cannot directly measure. The solution to this problem is to set up the website and stuff for my family now anyway, no matter who’s right or wrong. No matter if my disease or something completely random gets me. No matter if I live for 5 more days or 5 more years. I just feel strongly about keeping a record of myself, and I know that if I had a different serious health problem, I would do the same thing. I have simply crossed a threshold where I am not comfortable with the risk anymore.
Perhaps I’ve made the impression of having a volatile or unhinged personality, and although this time is pretty stressful, it hasn’t prevented me from enjoying the things I do, writing about my ideas, and even trying art. I might seem a bit manic with my impassioned rant, but really, that was just something I had a lot of fun writing. I was always really awestruck by the nature of existence, and I don’t usually swear that much, so I thought swearing like crazy here would be a good way to communicate the magnitude of my appreciation.
I appreciate your concerns and criticisms, though.