Yes, Alice, I agree that this is absolutely bonkers. But so is being treated like the Mad Hatter by neurologists.
Patients fast before a basic chemistry, glucose monitoring, cortisol and cholesterol tests. If you eat before a morning glucose, it's not an accurate fasting glucose! Yes, they can do a A1C test but that's not always accurate in diagnosing diabetes either.
Patients withdraw from caffeine before a stress test. Why is that any different for an EMG/SFEMG? It interferes with both tests' results.
I realize that "preparing" for a SFEMG is silly, however, when a test is so unreliable, trying to create the best conditions for that test is not silly. You are right that the test is highly inconsistent. It's also time consuming and there are very few people who can do it, let alone analyze it, well.
Factors like subcutaneous fat SHOULD be taken into consideration when a doctor evaluates results. It's not unlike how a low voltage QRS might not give the best results for a cardiologist unless they magnify the wave on the machine before testing an overweight patient.
Is this information useful for a patient with MG? Yes, especially when a doctor proclaims that they don't have MG based on a negative SFEMG. MG is a clinical diagnosis backed up - not backed down - with test but there are neurologists, as you say, who follow that Gold Standard because I'll bet not one of them wants to put down the work of Erik Stalberb (inventor of the SFEMG). Or due to the "because I said so" proclamation by behemoth institutions (you know who you are!). So it's not only about gold standards but also about PR. And ego. And money. And lots of things that have nothing to do with the truth.
Frankly, I think the neurology community is long overdue for an overhaul in how they approach not only MG but women in general. Yes, a few men get the "it's all in your head" approach too. It's time to SPLIT the practices of psychiatry and neurology. In their minds, they are so intertwined that they can't objectively see patients and their diseases at the same time, IMO. Yes, other specialties tend to go straight to the psychosomatic game but it's neurologists who've brought it to a whole new level of crazy.
Seishin is trying to do something useful for patients. I applaud that. Whether it's something we should have to do or not, it's a reality we're often faced with during the diagnostic process. At least being aware of these parameters and prejudices is useful. It was for me years ago.
The neurologist who diagnosed me told me that he has seen MGers in wheelchairs who test negative on SFEMG and MGers who appear to be fine test highly positive on it. So while it's a useful test for those it does help to diagnose I don't think it should be discarded completely simply because it doesn't diagnose everyone.
Perhaps if medical school could produce "creative diagnosticians" who see the patient and not only rigid test results and algorithms, we might have "happy" patients instead of the completely distressed ones we often encounter.
Abby, my SFEMG's were all painful, no matter where the needle was placed. Interesting. I wonder if that has to do with the damage from my B12 deficiency.
Sorry, Seishin, I had to get that out. I hope your SFEMG goes very well.
Annie
This is one of many articles on an EMG and subcutaneous fat.
http://www.ncbi.nlm.nih.gov/pubmed/12812327