» On 8/01/2026 12:00:00 AM Mountain Standard Time, Alan wrote:
Macke The Knife. 

During the year or so since my MG diagnosis, the path has taken many strange twists and turns. I almost forgot about this one, until I read some old postings on Facebook:

16Aug2025: So my neurologist and his passive-aggressive assistant try to set me up with an IVIg for the Myasthenia Gravis. After several back-and-forths with the increasingly-hostile assistant, I attempt to get some info from the infusion company. Again, it's like pulling teeth. After THREE WEEKS of bullsh*t, I finally get the price tag - SIX THOUSAND DOLLARS! I ask the doc if he can prescribe something a bit less expensive. The idiot assistant jumps in and says I don't have the right insurance, but I can beg for financial relief at tafcares.org - however, after several more phone calls, I discover that even tafcares won't cover this treatment. In the meantime, the doc's front office calls to say my Telehealth appointment in September has been canceled, and I need to show up in person. No explanation. This means I'll have to drive twenty f*cking miles and get all gussied up (take a shower and wear pants 😉). At this point, I'm dangerously annoyed, so I start shopping for a homeopath to treat the Myasthenia Gravis:
1) "Can you spell that, please?"
2) "Our doctors are not familiar with your disease."
3) "One of our doctors said he'd try to treat it, but he can't guarantee the outcome."
4) "Sure, I've treated MG before. I've treated some diseases that I haven't even heard of."
I finally settle on this gal, but she's 81 years old. Hope she hangs in there 'til my appointment on the 19th... 😉

Then I decide a backup plan is needed - thymectomy. My neurologist is reluctant, to say the least. He says I'm past the age for effective results, even though he's admitted that my thymus is pumping out all the bad stuff that's making me sick. He doesn't want to give me a referral to a thoracic surgeon, so I email a veiled warning:

"The Mestinon that you prescribed is becoming less and less effective, and I am slowly sliding into more and more serious symptoms: shortness of breath, sporadic choking, trouble holding my head up, etc. I have explored the AMA playbook for MG treatment, and found that it winds through a series of expensive drugs, but usually ends up at thymectomy for symptoms like mine, even for old guys on Medicare. I am desperate, and have made an appointment with a homeopath on Tuesday. But I would rather stick with the AMA approach, and cut to the chase. Can you provide a surgeon referral? Pretty please?! Sugar on top?!!"

I was inordinately proud of my not-so-subtle arm twisting, complete with implied threat of malpractice. And it worked! I have an appointment on the 20th. The thoracic surgeon's name is Macke, so in this household we've started calling him Macke The Knife. 😉

20Aug2025: Doc Macke has a great sense of humor. He told an MG joke early in today's meeting, and I, of course, chuckled. He said, "You know, I've told that same joke six times this week, and you're the only one who's laughed!" We hit it off, right then and there. He went on to explain, in very precise and careful detail, why my case fell "outside the guidelines." And I clearly understood that his hands were tied. One of the big issues is this: according to my recent CT, I don't have a thymoma (cancer of the thymus). But I'm scheduled for another CT in October, for unrelated issues. So I attempted a risky joke at the end of the half-hour: "I'm gonna try, during the next month, to develop a thymoma. Maybe I can 'will' it into existence." He laughed, but said, sternly, "You should never try to get cancer." I replied, "Oh, you know I'm only joking." He laughed again, but as I went out the door, I turned and whispered, "Partly." That sealed the deal. I may never get a thymectomy from this guy, but if I do, he'll remember me with a big smile, when he's slicing me open. 😉

May 2026 UPDATE: Maybe it's lucky I didn't get the surgery. One of my Facebook friends recently passed away, apparently from complications due to her thymectomy.
R.I.P. Dr. Katie Amatruda (1954-2026).

Labels: mg