I'd prefer not to include the real name of the doctor who did weekend fill in over Christmas day, so I'll just call him "Doctor Nosferatu." Doing an image search this is the best visual representation of him I could find:
First, some background. The situation is not great at the moment. I had a major relapse of the Myasthenia Gravis which is far worse than anything I experienced before. Almost no ability to speak at all for weeks, except in very limited capacity. Swallowing is extremely difficult to the point where I had to have a tube down my throat to be fed due to lack of ability to eat enough orally to sustain my nutrients. So I spent some time in the hospital working this through.
Now-- I am being treated by multiple teams-- the neurology team is good at dealing with the Myasthenia Gravis, but not so good for dealing with overall health and last time they were the primary team, they missed some important things going on at other levels, so I really prefer to have the general medicine team leading the way and neurology advising them on items relevant to the Myasthenia.
So each day in the hospital, I would get two initial visits with interns, one from each team, and then a larger group from each team to come check in on me, sometimes with contradictory information, which is always fun.
Now, to the issue: there are several ways of treating the myasthenia gravis. Some are symptom related and some are more curative. There are very few short-term curative solutions and none of them good. The long term curative solutions are problematic but can be helpful. There's a specific immunosuppressant that they wanted me to start taking. All our research, (and my primary neurologist) indicate that it takes a minimum of three months to see any benefit from this drug (CellCept). I'd been trying my best to explain this to them-- I'm concerned about starting an immunosuppressant in an environment rife with disease (hospitals) and don't see the point of rushing into something which won't provide benefit for months.
The thing is, I was inclined to start this drug and hoping it does provide long-term relief, but just didn't want to be pushed into it.
So let me mention a couple things about Myasthenia Gravis:
(1) Relaxation and sleep do a lot to help reduce the symptoms.
(2) you should avoid stress as much as possible when experiencing flare-ups.
So here I am, Christmas morning and the neurology team comes in led by Dr. Nosferatu, and he opens with "we're worried that you're unwilling to take the steps necessary to make yourself better."
Now, mind you, I can't really speak much, so my wise and wonderful sweetie is helping out with this. She asks for clarification and he mentions CellCept. She's done the research and starts explaining that from everything we've read, there's no rush with it, it won't provide any immediate relief and I want to focus on getting well in the short term before worrying about long term, etc.
At which point he starts to interrupt her, saying that it will start working within the month and at which point she says "that's not true."
That's when I thought he was about to do this:
Honesty, I was a bit tired at the time, so I actually kind of remember it like that, but still...
Things got seriously unhinged after that. This doctor got belligerent and started raising his voice, talking about his vast expertise (which, we later discovered, has nothing to do whatsoever with myasthenia gravis) and how we could look things up but please remember that he's the expert. Sweetie attempted to try to meet him halfway and explain how valuable she thought his advice was in helping us come to our own decisions, but by that point, he seemed to have been wound up like some sort of demented children's toy that got banned in the 80's after multiple burn wound incidents.
I will note, at this point, that the other doctors in the room, during this whole event, got extremely quiet. Some of them looked appalled. There was a nurse in the room as well who looked horrified.
This went back and forth a bit. The real kicker though was when I could get enough of a voice together to explain that I'm glad to consider the drug but feel like at the moment, I don't have the capacity to make that decision fully and without duress and want some relief from my symptoms (and malnutrition) to think more clearly.
At which point he said "well I think you DO have the capacity and if I didn't, this would be a VERY different conversation."
This was kind of a strange turn for me, because even if he didn't intend it like that, it actually sounded like a threat.
And that's when we reminded them that we're glad to think about what they have to say but we'll talk it over with the primary team who's treating us at which point he stormed out of the room saying he'd talk to them, as all the other doctors kind of sheepishly followed.
My sweetie kept her temper, through the whole thing (it was not easy for her. I remain extremely impressed). I suspect that may have pissed him off most of all.
And then it was just kind of us sitting there saying "what was THAT?" with nurse awesome apologizing over and over again.
So, that was MY Christmas morning.
3:59 PM PT: Minor update. Back in the hospital again. Still not able to swallow enough food or liquid. Hopefully we'll get a longer term solution this time.