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Well… how did I get here?
In the early 2000s, my body developed a powerfully painful and stubborn case of full-body urticaria, or hives. After many visits to the local ER, and taking a 250-mile road trip to see a hotshot immunology and allergy specialist at UCLA, all the doctors gave up. They couldn’t give me a clear diagnosis, and tried to patch up my symptoms with a boatload of steroids. So I was forced to widen my healthcare horizons to include homeopaths, acupuncturists and hypnotherapists. The situation got so desperate, I was seriously considering witch doctors. But after all was said and done, I spent nearly two years in the dark, during My First Autoimmune Episode. I didn’t know what was happening at the time, and I was shellshocked, but I eventually learned to minimize the PTSD through meditation.
Flash forward to 2022, when an ophthalmologist implanted intraocular lenses to replace my two cloudy cataracts. Approximately one month later, I developed double vision and a droopy left eyelid, initially misdiagnosed as CN III, a third-nerve palsy. Within days, my speech started slurring. That was misdiagnosed as TIAs, or transient ischemic attacks, treated with low-dose aspirin. The neurologists told me the TIAs were early warning signs of a full-blown stroke. My eye surgeon claimed the operations weren’t to blame, but I was later told by another doctor that some surgeries can unmask a “hidden” case of subclinical myasthenia gravis. The body’s stress response to surgery can trigger an immune system reaction. In individuals predisposed to autoimmune disorders, this can lead to the production of the antibodies that cause MG.
Also, the anesthesia used in cataract surgery can reportedly unmask subclinical MG. This is because many anesthetic agents affect the neuromuscular junction, the same area targeted by MG. During surgery, an anesthetic can cause a person with latent MG to develop severe and unexpected muscle weakness. Anesthetic drugs, particularly neuromuscular blocking agents, or NMBAs, act on the neuromuscular junction to induce muscle relaxation. So neuromuscular transmission becomes compromised.
In early 2025, I obtained a prescription for ketamine, because a friend said his double vision cleared up after he took a hit of “Special K” at a party. My experiments with ketamine were fun and informative, but I never even got close to the overwhelmingly dissociative “out-of-body” experience, or hallucinogenic k-hole, that I was seeking.
However, the pieces of this puzzle didn’t begin to fit together until mid-2025, when I was diagnosed with MG. The day I got the AChR blood test result was terrifying and satisfying, in almost equal parts. Living with an incurable disease was a daunting prospect, but I was relieved the mystery was finally solved.
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2 Replies
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Letting the days go by
Water flowing underground
Into the blue again
After the money’s gone
Once in a lifetime
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Alan, what a journey. Thank you for sharing all of that with everyone. The years of uncertainty you went through before finally getting answers must have been incredibly difficult. It’s unfortunate how surgery or anesthesia can bring MG symptoms to light, yet few people hear about that connection until it happens firsthand.
Your story really shows the persistence it takes to keep searching for answers through so many twists and misdiagnoses. We’re glad you’re here and part of the MG community. Sharing experiences like yours helps others feel seen and understood as they work toward getting their own medical answers -Jodi, Patient Advocate
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