SFEMG and Me

I will make this relatively brief, and will be glad to discuss it in more detail, with any one who truly wants to learn from this for the benefit of future patients to come.

I am a physician myself, and have been suffering for the last 4 years (or possibly 20 years) from what is now realized as a rare form of myasthenic sydrome.

the most disturbing manifestation of my illness is (unfortunately) significant respiratory muscle involvement leading to recurrent episodes of acute respiratory failure.
and as I have learned by now, a rare but previously described clinical manifestation of this illness. (mostly in its congenital forms).

this manifestation was diagnosed (with out any doubt) by almost every neurologist I have seen, as "anxiety". to the extent that they have eventually endagered my life.

fortunately, there were others involved in my care (pulmonologists, hematologists, interntists, anasthensiolgists, rehab physicians, and even psychiatrists, as well as myself, and eventually more open-minded neurologists) who gave me proper management on time.

yet, it is very hard for me to forget that night (during my hospitalization in one of the best MG centers in the world), in which the concerns of the nurse seeing my state where completely igonred by the residents, and atributed (as I later learned) to "functional problems" and my reluctance to go home (as obviously, who would want to leave such an excellent 5 star hotel), and being "reassured" by this, the nurses took off my respirator mask, in order to measure my vital capacity and chart it properly.

and indeed they were very "observant" and easily recongnized the fact that I was hardly able to breath on my own, and even told me so. and diligently documented it on the chart as well. fortunately, they returned my respirator mask back, before there was any irreversible damage. yet, it took me a long time to overcome this traumatic (and totally unnecessary experience).

I now have an excellent neurologist, pulmonologist and other physicians involved in my care, who are doing their best to manage my preplexing illness, despite the very unusual clinical course, test results and response to treatment.

what is most disturbing is that talking to other patients, I came to realize that the way I was managed is not "unique" and even patients with a less unusual clinical course are missmanaged for many years, once they don't fit the exact "MG box".
also, the SFEMG, an ancillary test is considered by most MG specialists in the world to have a sensitivity of 100% ( which means that a normal test done in a weak muscle rules out MG). such a high sensitivity and negative predictive value is not known to exist in any medical test, and I can't see any reason why this test should be different. and I believe that this assumption can lead to serious mangement errors, such as happened in my case.

it seems to me (although I may be wrong) from my experience and from that of others, that neurologists (more then other physicians) tend to have many such "axioms" (I am using this word, because if you carefully read the pertinent literature you will see that there is no evidence for this assumption regarding the SFEMG, especially in seronegative patients), and tend to think that what ever they have not personally seen or is not written in their text books, just doesn't exist. and instead of learning from unusual disease presentations, and gaining a better understanding of the illness, they dismiss those patients, and many times atribute their illness to (yet unrecognized by modern psychiatry) emotional disturbances. and I truly do not think they are aware of the hazardous consequences of this approach.

I do hope that someone will find the way to use my story in a positive way, in order to help other patients recieve better management and care. and as I have said I will be glad to provide further details and discuss it with any one who truly wants to learn from it.

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