Lizzie,

This is perfectly correct, and I do not believe that any patient in his/her right mind would want to recieve such treatment needlessly.
yet, one can't ignore the fact that those "black and white" results do not exist in neurology. and even more precise fields of medicine are not an "exact science". and it is said that if you do not want to miss any case of acute appendicits, you would have to be ready to have some "white appendixes"taken out.
the "objective" tests that they use to diagnose this illness (and many other neurological diseases) have significant limitations.
and although many neurologists and patients think that if they could only do the test under the proper conditions it would "work", in reality this just doesn't happen. (because of all the reasons that were mentioned).

this is an answer I recieved from a reputable internet site-

Question:
is it possible to have a normal SFEMG during a myasthenic crisis or near-crisis. eg-when there is severe generalized weakness and respiratory difficulties with a concomitant drop in the MIP and vital capacity. if not what is the possible alternative diagnosis. and what further tests need to be done, in order to verify it.

Answer:
No, it is not possible to have normal SFEMG in muscle weakened by MG. So if you have generalized weakness and a weak muscle showed normal SFEMG results, the cause is something else. There are other possibilities but it is not at all a good idea for me to speculate over the internet. The key is to work directly with an experienced neuromuscular specialist. An accurate diagnosis requires a solid doctor patient relationship. It is also always fine to get a second opinion.


I have not yet been able to recieve an answer from any neurologist I talked to as to what that "something else" is. All I can tell you, based on my own experience the only "something else" that they have in their differential diagnosis is some ill defined emotional problems, that only they can "see". as neither you, your family and friends, or even excellent psychiatrists are capable of understanding such complex emotional problems.

further more, I am not aware of any test to which I (or any other reasonable physician) could give such a categorical answer.
if you asked me -could a patient have a myocardial infarction with a normal EKG? I would answer that this is very unlikely, but indeed possible.
if you asked me- could you have a patient with leukemia and a normal blood count? I would give you the same answer.

the SFEMG is a surrogate marker or a very different biological event.
all it tells you (if it is done correctly and under the right conditions) is that there is a normal conduction of the electrical signal from the nerve to the muscle. it gives you no information what so ever, as to how this electrical signal translates into the muscle contraction.

it is true that in most patients the curlpit is in this process and they do have an abnormal transmission of the electrical signal, but what about the minority that don't? it is not only that they do not recieve immunosupressive treatment, they are deprived of any treatment what so ever, and treated with disrespect (to say the least).

further more, some patients that have diagonstic SFEMGs do not have an autoimmune disease and do not require immunosupressive treatment, as they have a genetic defect as the cause of their illness.

and there are quite a few reports in the medical literature of patients who recieved agressive immunosupressive treatments and were later found to have CMS.

medicine is not an exact science and neurology is in the most un-precise side of the spectrum. myasthenia is not the best understood autoimmune disease, and not the most easy to treat. it would be nice if it was, but it's not.

and trying to "fit" patients into "black and white" boxes, ignoring their clinical symptoms, can only lead to much more significant mistakes.

this is at least my oppinion.

alice