» On 12/20/2025 02:13:00 PM Mountain Standard Time, Alan wrote:
Confirmation Bias? 

It's been 72 hours since I started taking the Myasthenia Gravis research pills, but I still haven't figured out whether they're real medicine or placebos. The research supervisor told me to be patient for a month. My body seems to be reacting in unusual ways, but who knows? It might be the dreaded placebo effect. 😉

Labels: mg

 
» On 12/20/2025 05:30:00 AM Mountain Standard Time, Alan wrote:
De Quervain's Tenosynovitis. 

Here we go again... about a year ago, my wife had surgery for a trigger finger (stenosing tenosynovitis) on her left hand.

This time, she has a similar inflammation of the tendon sheath on the thumb side of her right wrist. The ailment is named after Fritz de Quervain (1868-1940), a surgeon from Sion Switzerland who documented the condition in 1895. Caused by repetitive strain (like carpal tunnel), it's also called "Texting Thumb," "Washerwoman's Sprain," or "Mother's Wrist."

When Anikó told her new doc (who is a handsome devil, I must say) about the mundane incident that precipitated this latest medical appointment, he translated her actions into "aggressively mashing potatoes" and promptly prescribed a cortisone injection. She liked that--and him--better than last year's surgical treatment. 😉

UPDATE: I really like this guy. He said he's been offering the same advice for 20 years, but he just recently figured out that patients "remember" a lot more info, if he gives them two business cards, printed front and back. Why don't ALL doctors do this?

 
» On 12/19/2025 06:10:00 AM Mountain Standard Time, Alan wrote:
Confessions Of A Psychonaut. 

In 1938, Albert Hofmann (1906–2008) synthesized lysergic acid diethylamide, better known as LSD, while working as a chemist at Sandoz Labs in Basel, Switzerland. On April 19, 1943, Hofmann self-administered the first human test of LSD and when things inevitably got weird, he asked his laboratory assistant to escort him home. Due to wartime restrictions on automobile use, they made the journey by bicycle. Since then, Bicycle Day has become an unofficial celebration of the psychedelic revolution. In 1996, Sandoz merged with another Swiss pharmaceutical firm to form a third entity, which I fondly call the "Swiss Overlords." (And there it is: the Myasthenia Gravis connection.) 😉

Little-Known Factoid: My first acid trip took place around the same time that Alan's Psychedelic Breakfast was released by Pink Floyd, on their 1970 album "Atom Heart Mother." Factoid 2: After meeting me in the late 1970s, while I was working at Saturday Night Live as an NBC Page, Paul Simon was inspired to write this 1983 song as a heartfelt tribute: You Can Call Me Al. Just kidding. 😉

In 1976, the U.S. government offered me $725 to be a research subject and participate in an experimental protocol entitled "Clinical Studies of Tolerance to Marijuana." No joke. I was proud and honored to serve my country. 😉

Labels: mg

 
» On 12/18/2025 09:00:00 AM Mountain Standard Time, Alan wrote:
The Blind Leading The Double-Blind. 

Yesterday, I received my first batch of pills in the Myasthenia Gravis research study. Since this is a double-blind clinical trial, nobody (except the pharmaceutical company sponsors in Switzerland, the "Swiss Overlords" 😉) will know whether these gelatin capsules are real medicine, or just placebo pills. So this "Guinea Pig" asks:

(1) Is it live, or is it Memorex?
(2) Red pill or blue pill?
(3) Stefani Germanotta or Lady Gaga? 😉

A placebo group is a control group in a clinical trial that receives an inactive substance or "sham" treatment that mimics the real treatment being tested. This group is used as a benchmark to measure the true effectiveness of the active treatment by accounting for non-specific effects, such as the placebo effect (when a person's belief in a treatment causes a positive change). By comparing the results of the group that received the active treatment to the results of the placebo group, researchers can determine if the active treatment has a genuine effect beyond the power of suggestion.

Blinding: In a clinical trial, participants are often unaware of whether they are in the placebo group or the experimental group (which receives the real treatment). This is called a blinded trial. When neither the participants nor the researchers know which group is which, it is called a double-blind trial, which further reduces bias.

Controls for bias: The placebo group helps researchers account for other factors that could influence the results, such as a desire to please the research supervisor, the expectation of getting better, attention from healthcare professionals, and the natural course of the illness.

Types of placebos: Might be a sugar pill, a saline injection, or even a procedure like a fake surgery, as long as it is indistinguishable from the active treatment.

Measuring efficacy: If the experimental group shows significantly better results than the placebo group, it indicates that the active treatment is effective.

Bonus chuckle - Paul Noth's "placebo" cartoon, referencing Henri Matisse's "La Danse" (1910):

Labels: mg

 
» On 12/17/2025 08:48:00 PM Mountain Standard Time, Alan wrote:
Calendar Boy. 

When I left the neuroscience center this afternoon, I received several lovely parting gifts:

1) A log book to record each pill I take. "Morning Dose" and "Evening Dose." "Date" and "Time." Down to the minute...

...but luckily, they don't require me to write in the seconds. 😉

2) A personalized calendar with 25 rows of dates, plus three columns: "Early date," "Ideal date," and "Latest date." Since I receive only 70 pills at a time (35 days' worth of twice-daily doses), I have to return to the research site every month for the first six months. After the double-blind portion of the Myasthenia Gravis research ends, they will trust me with a three-month supply, then six months. Finally, there are Safety Follow-Ups, which extend through Tuesday, June 24, 2031!! When I was discharged from the Air Force, 50 years ago, I was certain that type of regimented schedule was in my rear-view mirror. But when you think about it, this calendar is a very considerate item. It allows us to plan out our life to coordinate with the needs of the clinical study...

...for the next FIVE YEARS. 😉

3) A little white bottle of 70 pills, and a 15"x11"x11" insulated case (with THREE massively heavy ice packs) in which to carry them. It felt like we were transporting human organs for transplantation. 😉

The pills require cold temperatures, and they need to live in a refrigerator. So any time I expect to be outside the house for one of my doses, the pill bottle must travel with me, in this insulated case. Which means we have to take the insulated case whenever we go on vacation, or even overnight trips. 😉

Labels: mg

 
» On 12/17/2025 02:13:00 PM Mountain Standard Time, Alan wrote:
Entry-Level Guinea Pig Position With Swiss Overlords In MG Clinical Research Study. 

The Hot Poop: recently, I've been applying for Myasthenia Gravis clinical trials and research studies. I naturally want to get involved with the development of new treatments for my MG, but I'm also not averse to earning a few extra bucks on the side. MG is a chronic neuromuscular autoimmune disease that's rare enough (0.003%) to attract the attention of major-league researchers and pharmaceutical companies (note tennis great Monica Seles' recent MG endorsement deal with a well-known Dutch immunology firm), and some of them are even willing to pay peons like me. At one point, I was in the middle of a half-hour screening call with a big-time research group when my medication began to demand some *immediate* attention. You see, my neurologist has written a prescription for Pyridostigmine, which features a nasty little side effect: uncontrollable explosive diarrhea. So in mid-conversation, I tiptoed gingerly into the toilet, dropped trou, and plunked my bare butt onto the crapper. Luckily, nothing happened immediately, so I wasn't forced into the awkward position of explaining any strange noises to the nice lady on the other end of the phone line.

A few weeks later, I drove 23 miles to a world-famous neuroscience center, for the heavy-duty screening process in one of their MG clinical trials. I had already completed the blizzard of release forms via email and talked on the phone with their research supervisor. So far, so good. But the screening appointment was a several-hour interview marathon, with blood and urine samples, an EKG, and several strength and breathing tests. Plus time-consuming quizzes on their iPad and two painful shots for exotic types of invasive meningococcal disease. The experimental medicine would apparently leave me open to several nasty bugs, so they wanted to protect me with vaccines. It was exhausting. My MG was not accustomed to so much stress and exertion, and I could feel the life draining out of my body. But I was also very much aware that she was evaluating me at every step, looking for any excuse to exclude me, which would save them some time and effort. So I tried to keep up the energy in the room with nervous jokes and chatter. She slotted me in MGFA Class IIa, but after I scored a 10 on the MG-ADL Scale, she said one less point would have disqualified me. So I was elated when she finally announced, at about the 150-minute mark, "OK, you're on the list - you're Patient Number 6!" I still needed approval from the drug company sponsor in Switzerland, but I had survived the worst of the screening. That's when I wisecracked, "I am not a number, I am a free man!" It's a line from The Prisoner, a cult British TV series broadcast in the 1960s. But she is in her mid-40s, so she's not old enough to understand the reference, and I had to explain it. However, if the Swiss Overlords accept me into their study, you know that I will be using that line as a callback joke. EVERY DARN TIME I RETURN FOR MY MONTHLY PILLS DURING THE NEXT TWO-AND-A-HALF YEARS!

* I get a sixty-dollar meal allowance, plus mileage reimbursement and $50 stipend, every time I make the 46-mile round trip. But if I'm accompanied by a caregiver, s/he gets another sixty bucks. So the research supervisor asked: "Do you have a caregiver?"
I replied, "I have a wife."
"Same diff. Bring her along."

* I haven't met Patient Numbers 1 thru 5, and probably won't. They are part of a select group of 140 people at 80 locations worldwide, so the competition to get included is fierce. One of the five travels 1,200 miles from Montana to Arizona every month. Another one is a patient of my neurologist. And my neurologist was a student of the uber-neurologist who's in charge of this clinical trial, plus several others. Small friggin' world. 😉

* This is a double-blind phase-3 clinical trial. For the first 6 months, I might be getting a placebo. But then, all of the experiment's participants get 2 years' worth of pills (dispensed monthly) that will treat the MG in our bodies.

* The medicine being tested is currently used to treat other illnesses, but the Swiss Overlords want to find out if it can also be used "off-label" to treat MG, by "acting proximally in the alternative pathway of the complement cascade." No, I don't understand that gobbledygook, either. But everybody is really excited about the possibilities, and they're spending a lot of money to hire their 140 "Guinea Pigs."

* "Off-label" use refers to a medication that has been approved by the U.S. Food and Drug Administration (FDA) for a purpose or in a manner that differs from the FDA-approved labeling. It's a common and legal practice.

* According to Google, the Wholesale Acquisition Cost of this drug is around $560,000 per year, as of early 2025. Yowza. You know how your local smack dealer says, "The first one's free"? I suspect this may be a new way for the drug company to drum up repeat business: "Hook 'em for two years, and you got 'em for life." But the joke's on them. I'm pretty old, and statistically unlikely to last very long after the 24 months. 😉

* By the way, my MG is not super serious at the moment -- I'm just permanently exhausted, cross-eyed, constipated, and staggering like a drunken sailor -- but it will have a significant impact for the rest of my life. And if I'm not careful, it could kill me. Highly unlikely, but still. I have drilled my wife on what to do if I stop breathing or start convulsing, but she's not very happy about learning stuff like that. Remember, MG supposedly killed Aristotle Onassis (at the age of 69), the Greek billionaire who married Jackie Kennedy. If he had drilled her, he might be 119 by now. 😉

* UPDATE: The Swiss Overlords have just approved Patient Number 6. I've been waiting for this day since August 30, when I first applied for the clinical trial. Stand back. 😉

Labels: mg

 
» On 12/04/2025 07:00:00 PM Mountain Standard Time, Alan wrote:
Change In Protocol. 

I received a Menveo booster vaccination yesterday. It's supposed to protect me from meningococcal infections. You see, I'm going to be enrolled in a Myasthenia Gravis clinical trial on December 17. And the research medicine will leave me open to several nasty bugs. So this latest injection brings the total number of shots I've had to 5 (FIVE, count 'em, FIVE). I was scheduled to enter the clinical trial on November 25, after FOUR shots, but I just found out there have been TWO deaths of research subjects who had only four shots. So the research sponsors, in their infinite wisdom, have decided to change the protocol and require five shots. In other words, I think they're trying to avoid lawsuits related to the two deaths.

BTW, I was warned about the dangers of this clinical research study, way back in September. The two deaths have given me pause, but this little guinea piggy is pigheaded enough to forge ahead, risking his big fat pork butt on the cutting edge of double-blind scientific research. 🐷🐖🐽🐗 Let's hope he doesn't end up as a sliced ham sammich. 😉

UPDATE - They said the cause of death was unrelated to the clinical trial, and they were throwing around phrases like "abundance of caution." But I could tell they were spooked. The stench of fear was overpowering. 😉

UPDATE 2 - Black Box Warning: https://en.wikipedia.org/wiki/Boxed_warning

Labels: mg