Toothache to blindness

Started with a toothache

It's 2019, and I have a toothache. No big deal -- I'll go to the dentist. I make an appointment, and that tooth is infected and has to be removed. A week or two later, I start vomiting uncontrollably. After 6 days of straight vomiting, I go to the emergency room. They don't see an obvious cause on either a head or abdominal CT, but they give me some anti-nausea meds and IV fluids because I'm dehydrated. The nausea meds help for about a day, but even though they sent me home with a prescription, I'm soon back to vomiting. Weeks go by. I also get hiccups that last for 8 or more hours. Sleeping while you have the hiccups is quite a trick, but I learn to do it. Zero stars -- do not recommend. As the vomiting continues I schedule an appointment with an ENT. I have struggled with vertigo in the past, and maybe this is related. Inner ear? Via a hearing test I find out that I have above-average hearing, which I had long suspected. On one eye movement test they see something amiss, but it's not my ears, it's the central nervous system. They don't give me any further instructions to track that down. I go see a gastroenterologist who does an endoscopy to look at my stomach. My stomach lining is inflamed, but that's probably from all the vomiting. After 4 months the gastroenterologist finally diagnosed me with Cyclic Vomiting Syndrome (CVS), which is usually found in children. I'm 44 at this point. But the medication he prescribes helps the vomiting to subside (though I now think that may have been a coincidence). I also periodically had this terrible "nerve itching" in random parts of my body (usually torso). If I scratched them, it caused some of the worst pain I have felt in my life.

Changes in symptoms

Soon it's 2020, and in June I notice a sudden change to my vision. Parts of my computer screen are blurry. I go to the eye doctor who thinks I have NAION (Non-arteritic ischemic optic neuropathy). She refers me to a retinologist, but they don't take my insurance, so I never go.

In 2022 the vomiting came back. I go to my primary care physician and ask her to increase the dosage of my CVS medication, which she does. But the vomiting continues. It's so severe that I have to go on short-term disability from work after another fruitless trip to the emergency room. While I'm out on short-term disability, I have a stroke. At the time, the doctors thought it was two strokes, one brain bleed in my right frontal cortex, and an ischemic stroke in my brainstem. I had dysphagia (inability to swallow) and left-side weakness/paralysis. I go through 4 months of rehab to regain my abilities to walk, talk, swallow, and care for myself.

Seizures as a symptom

In 2023 the seizures begin. My first neurologist doesn't believe me, but with some help from my Stroke Support Group, I find a new neurologist. I began taking anti-seizure medication, which controls the seizures. At the time I assume the seizures are fallout from the stroke(s). I have to stop driving until I can go 6 months without a seizure.

5 months into that process, I notice another change in my vision. Serious blurring on the left side. I have an appointment with my (new!) neurologist the next day. She says I should go to the Emergency Room right away as sudden vision changes can be something serious.

Again, at the emergency room, they don't find anything. I saw a neuro-opthamologist in the ER, and he was sure the MRI would show something and Neurology would be able to figure it out. Unfortunately, the neurologist didn't see anything on my MRI. The neurologist tells me he does NOT think I had NAION in 2020, but that my optic nerves are quite pale, which is bad. I leave the ER with nothing, but I decide to follow up with a medical eye clinic.

NMOSD diagnosis

The ophthalmologist I see at the eye clinic says I need to instead to a neuro-ophthalmologist -- the same one I saw in the ER. When I get in to see him a week later, he looked at my MRI from that day in the ER. He says it clearly shows optic neuritis, and that I should be in the hospital. He thinks it may be MOG. He gets me admitted that same day.

In the hospital I get high-dose IV steroids, and my vision starts to return. I get many more MRIs, a lumbar puncture, and an array of blood tests. The MOG antibody test is negative, but the NMO antibody test is positive! I call the MS clinic to make an appointment, and their next available appointment is 5 months away. We message the neuro-ophthamologist and he intervenes with the MS clinic to get us an appointment the next day.

I have been binging the ABC's of NMOSD podcast by this point, so I know all about the disease by the time I am diagnosed with it the next day.

Life with NMO since diagnosis

3 months later, my vision has all but returned. I now understand that I had optic neuritis in 2020 as well, but it was untreated. And that my "ischemic stroke" in 2022 was really an NMO attack on the brainsteam. "Area postrema syndrome" is what caused the vomiting, not CVS.

Now I'm going through the process of trying to get them to cancel my blood thinners. Since I had a brain bleed, blood thinners put me at higher risk for another. The reason they gave them to me is that they though I had an ischemic stroke (blood clot), but I didn't. I have some more tests pending to rule out a blood clotting disorder, which they also thought I had, but that may have been left over from Covid.

I also got enough vision back to start driving again! I went to an optometrist to make sure and to see if I needed a new glasses prescription (I didn't).