» On 11/15/2025 05:50:00 AM Mountain Standard Time, Alan wrote:
Did Something Go Down The Wrong Pipe? 

Has this ever happened to you? Of course it has. Occasionally, it used to happen to me, too. But now it's an all-too-regular feature of daily life. Myasthenia Gravis causes fluctuating weakness in the muscles that control swallowing, including the tongue, jaw, and muscles in the pharynx. Weakness of the tongue makes it difficult to manipulate and move food and liquid to the back of the throat for a swallow. The so-called 'experts' call this "impaired bolus management." That phrase cracks me right up - reminds me of a little kid who's showing off by trying to use words he doesn't really understand. 😉 And how about all that extra phlegm, or mucus, produced by the MG? That's why "bulbar oropharyngeal dysphagia," or difficulty swallowing, is a common MG symptom. I used to chew and drink without a care in the world. But now I need to practice mindfulness, and pay close attention to each mouthful and every sip to avoid getting Heimliched. Otherwise, if I don't stay focused, I could be rushed to the E.R. with aspiration pneumonia, an infection resulting from food or fluid reaching the lungs.

I'm such a yutz. 😉

Labels: mg

 
» On 11/12/2025 06:28:00 AM Mountain Standard Time, Alan wrote:
Risky Bidniz. 

Yesterday, I got my first Bexsero booster. I'm nearly ready to be enrolled in a clinical trial (research study) testing a new treatment for Myasthenia Gravis, and the medicine will lower my defenses against meningitis. So the study organizers want to make sure I'm protected, with three different vaccines. Bexsero is one of them. I knew this study would be somewhat risky, but... 😉

UPDATE - I just researched the details: three separate shots, with two boosters, that protect against six different types of invasive meningococcal disease & sepsis-causing bacteria: Neisseria meningitidis - serogroups A, B, C, Y, W-135; and Haemophilus influenzae - type b. Woo-hoo! Ride 'em, cowboy!! 😉

UPDATE 2 - Meningitis is an infection, most commonly caused by bacteria or viruses. The experimental medicine is a complement inhibitor, which affects a part of the immune system crucial for fighting certain bacterial infections. Like meningitis. The study organizers promise that, if their medicine screws me up, they'll give me IVIg (Intravenous Immunoglobulin), an infusion of antibodies from many, many healthy, non-MG folks. A six-thousand-dollar consolation prize, for free! But this medicine is much more likely to be a successful treatment for the myasthenia gravis that's screwing me up in oh-so-many ways. The drug has already been through Stage 1 and Stage 2 trials, and has advanced to this Stage 3 trial, which wouldn't have happened if there were any negative outcomes. I'm pretty darn safe. But if I *DO* need the IVIg, that's a excellent deal, too. So: Win-Win! 🏆😎

Labels: mg

 
» On 11/12/2025 12:30:00 AM Mountain Standard Time, Alan wrote:
Well... how did I get here? One man's path to MG. 

In 2006, I had a great job. My dream job, actually. I was the Online Editor for a fancy lifestyle magazine. The folks in the community loved that blog. I was highlighting the things that made the city special, and interviewing the local movers and shakers, along with posting sound bites and beautiful photographs. Too pretty, it turns out. My bosses had been publishing the pictures in their paper magazine, but the advertisers were starting to complain that my photos were making their glossy ads look bad. So things began going downhill. The better my job performance, the more flak I encountered. And as the workplace became more and more toxic, my health took a turn for the worse, too. My body developed a painful and powerfully 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, all the doctors gave up. They couldn't find a clear diagnosis, and tried to patch up my symptoms with a boatload of steroids... which blew me up like a balloon. Fat Alan. So I was forced to widen my healthcare horizons to include homeopaths, acupuncturists and hypnotherapists. The situation became 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 shell-shocked, but I eventually learned to minimize the PTSD through meditation. And then the hives went away, as if by magic.

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 became slurred. 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 his surgeries weren't to blame, but I was later told by another doctor that some operations 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. In other words, my body had launched an all-out kamikaze attack on itself.

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 came close to the overwhelmingly dissociative "out-of-body" experience, or hallucinogenic "k-hole," that many people seek.

However, the pieces of this puzzle didn't really begin to fit together until mid-2025, when I was formally diagnosed with MG. The day I got the AChR blood test result, June 16, 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.

Acetylcholine Receptor (AChR) Binding Antibody: Positive>=0.50 nmol/L, Me=10.59
AChR Blocking Antibody: Reference Range=<15% Inhibition, Me=39%
AChR Modulating Antibody: Reference Range=<32% Inhibition, Me=98%

Labels: mg

 
» On 11/03/2025 08:30:00 AM Mountain Standard Time, Alan wrote:
Queen For A Day. 

This one's a three-parter. You might not immediately see how it's related to myasthenia gravis, but I'll eventually get there. Trust me. 😉

1) Queen For A Day started out as a radio game show in 1945, but by the time my impressionable young eyes saw it, in the late Fifties, it was on TV. Each contestant was asked to describe the recent financial and emotional hard times she had experienced. Many of these desperate women broke down sobbing as they revealed their situations. The winner was chosen by the studio audience, using an applause meter: if a contestant told a particularly sad story, the crowd was more likely to push the meter to its highest level. The winner would be crowned and draped in a sable-trimmed red velvet robe, while her prizes were listed. Little Alan was horrified and depressed. He couldn't believe these women would compete to tell millions of American viewers how sh*tty their lives had become.

2) Okay, this second part may seem like a detour, but please bear with me. In 1989, my brother Chris took me scuba diving in the Florida Keys. After we finished a wreck dive one day, we stopped at a bar in Islamorada. From what I can recall, this snapshot's fuzzy focus was pretty well matched by the fuzziness in my brain. By the time we asked somebody to take our picture, I was feeling the effects of too much sun and too little beer. So we began making energetic progress on the beer front. As the evening progressed, we noticed other scuba divers at the tables around us. They were doing what divers do best: telling tall tales to the waitresses and hoping to get lucky. We overheard some outrageous lies, passed off as authentic dive adventures. So we began to parody their macho conversations, making up sensationalized stories of our own: "A 10-foot barracuda tried to turn my arm into a snack, but I ripped out his jaw and made it into a lamp." "That's nothing. I killed a 20-foot moray eel with my bare teeth. Chewed him up and spit him out. Tasted like chicken." "Did I ever tell you about the 30-foot great white shark that bit off my leg? I used my air hose as a tourniquet and chased the sucker. After I retrieved my leg, it was stitched back onto the stump by a Key West hooker."

Several beers later, the stories became much more interesting. Wish I could remember them.

3) Alrighty, time to tie this all together and wrap it up. When I started joining the various online support communities for myasthenia gravis, I read the member anecdotes eagerly. The worse the story, the better I felt about my own MG: "Hell, I'm not doing so bad. Look at this poor bastard!" I'm sure most of the reporting was true, but after getting inundated with so many Sad Sack stories, I thought the unthinkable: "What if some of these folks are exaggerating, and competing for the title of 'MG Queen For A Day'?" 😉

Labels: mg

 
» On 11/02/2025 08:30:00 AM Mountain Standard Time, Alan wrote:
Lucky Man. 

Ooh, what a lucky man he was!

Yup, he was one of the fortunate sons. The Mestinon and Prednisone were doing their jobs.

Well, part of their jobs. The double vision kept coming back, like a bad penny. And the droopy eyes were never really gone. Plus, the slurred speech popped up, every time he tried to talk for more than a minute at a stretch.

And those horrific side effects! His digestive tract was getting destroyed by unpredictable explosive diarrhea.

But ooh, what a lucky man he was: he was already wearing Depends for urinary tract issues after a recent botched prostate operation. So now the diapers did double duty, covering all the bases.

He still liked to bitch about the years of misdiagnoses by allopaths, osteopaths, homeopaths, ophthalmologists, neurologists, neurosurgeons, acupuncturists, and hypnotherapists. Along with the utter futility of a mountain of pricey tests: MRI, MRA, CT, blood, urine, EEG, EKG, X-rays, and cerebral angiogram (roto-rooter, up through the crotch).

But ooh, what a lucky man he was: the stumbling, staggering, swerving, wobbling, weaving, and lurching got him a disability parking placard... which would hopefully protect him from that violent Instacart driver.

He eventually discovered that Mestinon was implicated as a causal factor in Gulf War syndrome.

And in military settings, Mestinon was used as a pretreatment for exposure to nerve gas.

Were the docs feeding him poison?

Ooh, what a lucky man he was!

Labels: mg

 
» On 11/01/2025 12:05:00 AM Mountain Standard Time, Alan wrote:
The Sickie Subculture. 

A few months ago, I was diagnosed with myasthenia gravis, a relatively-rare autoimmune disorder. Since then, I have joined a few support websites:

1) MGteam.com is the 6,589-member "social network for those living with myasthenia gravis." The network recently posted a "Casting Call," searching for members to share their personal MG stories and to be featured in a one-hour, Zoom-recorded video documentary. Chosen candidates would be compensated $500 for their time. I was very excited by the cash offer, so I filled out their casting form and submitted six (!!) headshots. Probably too much, but that's what I'm famous for. 😊

2) SocialHealthNetwork.com (SHN) lists compensated social media opportunities ($650 - $1,500) for patient influencers who have public Instagram and Facebook pages and are "willing to co-create social campaigns to amplify a healthcare company's resources to other patients and caregivers":
Compensated Opportunity for Patients Living With Myasthenia Gravis
Compensated Opportunity for Patients Living With Parkinson's Disease
Compensated Opportunity for Patients Who Have Had the Shingles Vaccine
Compensated Opportunity for Multiple Sclerosis Patient Leaders
Compensated Opportunity for MAC Lung Disease Patient Leaders
Compensated Opportunity for MDD Patient Leaders
Compensated Opportunity for Chronic Kidney Disease (CKD) Patient Leaders
Compensated Opportunity for Atopic keratoconjunctivitis (AKC) Patient Leaders
Compensated Opportunity for Macular Telangiectasia (MacTel) Patient Leaders
Compensated Opportunity for Renal Cell Carcinoma (RCC) Patient Leaders
Compensated Opportunity for Ovarian Cancer Patient Leaders
Compensated Opportunity for Hypothyroidism Patient Leaders
Compensated Opportunity for NSCLC Patient Leaders
Compensated Opportunity for Schizophrenia Patient Leaders
Compensated Opportunity for Parents of Teens
(I think there might be some overlap in those last two groups.) 😉

3) Myasthenia-Gravis.com and SHN offer a cute little badge, if you complete their Patient Leader Certification Program (PLCP). It takes an estimated 8 to 10 hours to finish the 12 lessons across 3 core learning modules, and students have 12 months to complete the course. They say the PLCP "is not an accredited program," but "was reviewed and approved by the Society for Participatory Medicine." They also have several other castes - Patient Key Opinion Leaders (KOL), Patient Influencers, and Patient Advocates - in addition to the Patient Leaders. I can't tell if this is like being the Pied Piper of Hamelin... or the First Lemming off the Fjord Cliff. 😊 Other folks have wondered if a Patient Leader is similar to Boris & Natasha's Fearless Leader (from The Rocky and Bullwinkle Show) or North Korea's Glorious Leader.

Labels: mg