Quote:
Originally Posted by teresakoch
While it is very frustrating to finally "get" a diagnosis of MG, we must remember that only 600 new cases are diagnosed in the US each year - in a country of over 300 million, it's not hard to understand why even the best doctors sometimes miss it.
It's a subtle and slow-acting disease in most cases - by the time we realize there IS a problem, we've probably had the disease for over 10 years; it can take many more years for a doctor to check off all of the boxes of what it ISN'T before they (possibly) think "MG".
Doctors are human, just like the rest of us, and they will usually only see any given patient for 30 minutes to 1 hour each year - it's hard to know what's really going on in a person's life when you aren't living in their body day in and day out.
Thankfully, we have forums like this where we can talk with other people who are going through the same things that we are and who understand what we are talking about!
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I agree that its not the first thing doctors think of when people come in with the type of complaints we have. Add to this that I was on TNF blockers which were masking some symptoms and I became harder to diagnose. My current neuro thinks they have value in treating MG and wanted to use me as a test case to see if traditional MG meds + TNF blockers would make a bigger difference, but wasn't able to get it approved.
The problem I had with the neurologist I'd been seeing for so long went beyond that, though. He couldn't believe he had missed the MG for five years and questioned the diagnosis. When I didn't want to go back to the doctor who used surgery as a diagnostic tool, I was told by my primary to make an appointment with the neuromuscular expert from the practice I'd originally gone to. After doing so, I got a call back that I was a patient of the senior partner and he doesn't share patients, so they rescheduled with him.
When I came back in, he told me he didn't trust the test results from the other doctor, that he wanted me off all MG meds for six weeks, then would redo the EMG, SFEMG, and blood tests. Despite the fact that the meds were helping I did this, but then had a conflict on the testing day. When the confirmation call came for the test, I pressed the button to cancel. When I didn't show up at the test, I got an angry phone call from the practice and was told I'd be charged as no-show. When I said I canceled on the confirmation call and needed to reschedule, they told me that they noticed I cancelled, but its an important test so they put me back on the schedule. I told them that they never notified me of this so I was not a no-show. To save me from typing the entire argument, I'm persona non grata at
the entire practice now (at least until my neuro there retires). Unfortunately its one of those big practices that are gobbling up all the smaller practices, so there aren't many neuros near me that I can actually see.
I'm probably better off anyway as my current neuro looked at the tests, accepted them at face value and just did her own strength testing to confirm the diagnosis. Plus she's an MG expert and her husband does MG research.