I can't decide if this is sad or funny.

People are preparing for a medical test, which is meant to diagnose their illness, or in other words give their physicians the tools required to give them what is likely to be effective treatment. (as why else should they care about the name of their illness?).

Some are even ready to risk themselves or get their illness out of control for that.

One can't wonder while reading this:

A. what does it say about this test?

B. what does it say about the physicians who are doing it?

C. what does it say about the physicians who are interpreting it and making medical decisions based on it?

Or as I have said many times in various forums (including discussions with neurologists)-The SFEMG is a test with a very low sensitivity and specificity, very inaccurate and very operator-dependent. It's accuracy and reliability have never been tested in patients with less typical forms of the disease. Using this test as the "gold standard" for the diagnosis of MG leads to nearly 50% of the patients with a clinical picture of myasthenia (and no alternative diagnosis) being left out with no diagnosis and no treatment (not even adequate supportive care).

This thread makes me even more convinced that its time to ban this test, or at the most realize its significant limitations and stop using it as the "gold standard" for the diagnosis of this illness.

There is no way to "prepare" for a medical test.
Some people who have a heart attack will have a completely normal EKG. They can't "make" their EKG be abnormal, no matter what they do.
Some people with leukemia will have a completely normal blood count.
Some tests require certain provocations, withholding of medications, but those are done by the physician doing them not by the patient.
You do not prepare for an exercise stress test, meant to see if you have coronary disease by stopping your medications and jogging prior to the test.
You do not prepare for a metacholine challenge test by inhaling fumes prior to reaching the clinic.

In the early days of my illness, I had a neurologist-an MG expert and also one of the best SFEMG performers. He had no doubt that I have MG, but had to find proof for that.
He told me that without a diagnostic SFEMG he can commit himself to this diagnosis, even though clinically he has no doubt and he has no other alternative diagnosis.

I agreed by his advise to stop all treatments and medications for a few weeks, as he promised me it will be safe and there will be no ill effects ( I still don't know today what effect it had on the course of my illness).
He told me to call him whenever I feel that I am having myasthenic weakness. He came in the late evening to do a SFEMG. He tried numerous times to get the "proof" he required, but as all my SFEMGs were repeatedly completely normal he started doubting himself. He no longer thought my clinical symptoms were myasthenic. He started thinking I have "emotional problems". Even when I crashed in front of eyes and my O2 sats dropped, he decided that I was just "anxious" and the Pulse Oxymeter was unreliable.

Trust me, he did everything possible to "make" my SFEMG positive. He strictly followed all your "best practice" guidelines.

Another SFEMG expert did a very elaborate test when I was (by all reasonable criteria) in myasthenic crisis due to withholding of a medication by the advise of my wonderful expert neurologist. He too got a completely normal SFEMG. It was therefore decided (by the same wonderful MG expert) that I was in "remission", yet not "aware" of it.

This actually fits the "alice in wonderland" logic. If patients can "prepare" for a test, and thus make it positive, why can't they be in "remission" without being "aware" of it?

Just like those cartoons in which bugs bunny walks in the air and doesn't start falling, until he realizes what has happened.

It's all up to us, the patients. If our SFEMG is not diagnostic then obviously we didn't prepare well for it. If we are nearly paralyzed and unable to breath on our own it's because we are not "aware" that we are actually healthy and strong.

If we dare criticize this "alice in wonderland" logic, it's obviously because of our mental problems which make us not only incapable of understanding that we do not have an insight into our own illness (as opposed to wonderful excellent MG experts), but also lack the ability to understand their complex way of thinking.