Nearly 2 years passed. I changed my life to avoid ever irritating the disc ever again. My pain very slowly died down, but I gradually experienced worsening memory and got a few new symptoms, like slightly worse balance and feeling random acceleration, but probably nothing doctors could definitively measure. This progression seems consistent with autoimmune activity; these are common symptoms in MS, perhaps the closest, but admittedly imperfect analogue. I felt like I had reached a dead end with doctors and wouldn’t be diagnosed without further progression, especially with many of them telling me to just listen to the other doctors who didn’t help me.
Last month, I got the first flare-up that did not appear to come from my neck. This caused 5 main symptoms all at once:
The breathing problems described in this post, which gradually got worse over the next few days.
Completely involuntary large-scale movements. This includes suddenly raising my arms up or sitting up in my bed, without any input at all.
Auditory hallucinations at night, which include loud whooshing sounds, sudden buzzes, and people talking (including someone saying “Hello?”).
Random popping, crackling, and muscle twitching inside of my nose.
Bladder function getting weaker.
At first, I thought the breathing problems were just sleep apnea and I needed to lose some weight. But then, the other symptoms quickly developed. I also realized how clear the breathing sounded, how chaotic my breathing pattern had suddenly become, and how I didn’t seem to be snoring or anything at all (characteristic of obstructive sleep apnea). I realized that this might be central sleep apnea, where the brain fails to control breathing during sleep, explaining its presence alongside the cluster of new neurological symptoms. I then read about how in autoimmune neurological diseases like MS, symptoms like these are associated with mortality due to respiratory failure. This paper on neurological respiratory failure states:
Inflammatory and infectious diseases of the CNS are a very heterogeneous group of diseases that can affect CNS function with different patterns of symptoms and signs. Pulmonary complications are related to an altered breathing control system, severity of associated reduction of consciousness, and involvement of respiratory muscles. Pulmonary impairments have long been recognized as major causes of morbidity and mortality in individuals with advanced multiple sclerosis, due to acute or chronic respiratory disorders. Chronic RF [Respiratory Failure] involves bulbar [brainstem] dysfunction with swallowing disorders, altered central respiratory drive, motor disorders following corticospinal lesions, or sleep-disordered breathing[includes central sleep apnea]. Acute conditions mainly involve spinal or bulbar [brainstem] relapse [flare-up] with extensive plaques, neurogenic pulmonary edema, or ARF [Acute Respiratory Failure], often following sepsis. Common pulmonary-related complications in encephalitis are poor gag reflex, pooling of secretion, and loss of swallowing, with risk of aspiration pneumonia and RF [Respiratory Failure] development.
Deaths due to MS can occur either by acute death due to brainstem involvement or to respiratory failure, or as a consequence of chronic disabilities leading to bronchopneumonia, sepsis, urinary tract infections or complications from decubitus ulcers.
So, there is precedent for this kind of process being fatal, with specifically brainstem and respiratory issues being a common cause. What matters is progression speed and location, and I already have significant progression and directly compromised breathing.
Think about if this was you for a second. There’s a process that’s taking over your nervous system, giving you permanent damage, and now you suddenly have a new cluster of symptoms, more than half of which cannot be explained by anything other than brain dysfunction. (Where is the data for these coordinated muscle movements and sound effects coming from?) And now, your breathing at night is chaotic, randomly slowing down, speeding up, and stopping, followed by sharp inhaling. Sometimes you breathe in or out twice in a row. And you now know that your disease is unpredictable and progression happens no matter what you do.
Now tell me, in the context of all of this, would you be comfortable waiting several months for a full workup by a specialist before preparing for the possibility of death, when you know your disease is weird enough that they might not figure it out in time? Would you risk sacrificing your only chance to pour your emotions out on hundreds of pages and let everyone know how much existence meant to you, how amazing it was, and all of the deepest and emotional things about you? Would you make that bet? You may never have the luxury of knowing, and the disease will continue on no matter what; it doesn’t care about the months you have to wait for doctors.
It’s not about the theory being right; it’s about it being possible. My arguments and theories are not perfect, and you could logically break them down in many ways. You could say that I don’t know for sure that it’s fatal, and you would be right. But that’s not what matters here. Even if there is a 90% chance that I am wrong, that 10% chance I’m right is too high to risk losing the chance to leave my legacy. I will not be taking that bet.
I completely understand your point; a definitive diagnosis will always be better. And I am indeed pursuing multiple paths:
Trying to get a neuro-ophthalmologist to confirm optic nerve damage.
Doing a sleep study to measure what happens to my breathing patterns and oxygen levels when I fall unconscious, as well as having a sleep doctor assess the unusual patterns.
Trying to get a new neurologist to assess the condition, hopefully ordering new MRI scans and/or a spinal tap. I suspect that I am at the point where the damage will be radiologically significant.
All of these will take months to get appointments, resulting in the current dilemma - that I might not have the luxury of knowing in time. If I am correct about the risk and neglect to preserve my legacy, the price will be astronomical.
I don’t want to give people the impression that I’m about to do something reckless or completely give up on seeking help. I am also prepared for the scenario where I miraculously survive. I’m not going to refuse emergency medical care or end things early, if that’s what you’re concerned about. You’re right that the fatalistic attitude can get too carried away and I should always challenge those biases so I don’t miss something. I’m just not getting my hopes up in case things go badly.
My desire to set this up quickly is just a result of me being uncomfortable with the odds of every passing day, not an indication that I intend to do something drastic. I just want the peace of mind that people will see my writing. Perhaps I hadn’t made it clear earlier, but I plan to write for a long time about all kinds of things, for pretty much however long I have left, building a larger and larger collection of pages.
I appreciate the comment and your concern. Sorry for the whole essay, but I felt like the context was necessary.
TL;DR: The entire history of my disease is highly unusual and I’m not optimistic about the efficacy of the medical system to diagnose it in time. I will, however, continue to seek tests and diagnosis in whatever way I can. Basically, there is a very unusual reaction to a herniated disc touching my spinal cord, causing widespread and prolonged phases of neurological damage. In early stages, the disease flared up in response to pressure on the disc, but now, I am getting flare-ups with no apparent physical cause whatsoever, suggesting a runaway process. A spine specialist told me that the herniated disc itself cannot be responsible for this kind of widespread damage, suggesting a different process. I believe that this process is an inflammatory autoimmune reaction.
I won’t do anything drastic. The reason I’m worried about setting this up quickly is peace of mind; I want to know that even if the worst happens, people will be able to read my writing. I plan to write extensively, for as many days as I can, to capture as much of my life as I can.
I will pursue expert opinion as best as I can to finally get a full diagnosis, but I don’t know if I will have that privilege due to the sheer amount of time it takes. In the meantime, I am forced to work with uncertainty and my own non-professional analysis, which, although supported with a couple of doctors’ opinions, is still theoretical at this stage.
However, I was able to predict symptoms and aspects of my progression in advance, and, even if there’s only a small chance that I am correct, I consider the risk too high compared to the price of losing the opportunity to share my genuine self to my family and the world. I remain open to the possibility that I could survive, but I want to prepare for the worst case, because I feel like if there’s any sign I should prepare, it’s the chaotic and disorderly breathing that I developed last month, a symptom that, according to medical literature, may progress to life-threatening complications in the context of inflammatory neurological disease.