Hi,

my personal experience is fairly rare and unusual, but is still part of the MG spectrum. And one of the reasons, that I am trying to do what I can to help others have a shorter route (if possible).

I had some mild degree of intermittent exercise intolerance since early childhood. (but, nothing that warranted any medical consultation).

when I was 28 I started having intermittent weakness and mostly ptosis of my left eye. I was diagnosed with MG (clinically) within a week. I received mestinon, which helped tremendously for about 3 months, and then started helping less. All my tests (EMG and antibodies) came back negative, so they decided I had ocular MG. A few months later, I started having episodes of much more severe weakness (to the extent that I could hardly get out of bed), and some breathing difficulties (only when I exerted myself). Those episodes could last any where from a few hours to a few days, and were extremely confusing. During one of those more severe episodes I was seen by a neurology resident in the ER, who admitted me with the diagnosis of severe exacerbation of generalized MG, but as my tests were again negative, and there was significant improvement within a few days of bed-rest, I was sent home with the diagnosis of "medical student's disease".

I kept on having intermittent symptoms for about another year, and kept on taking mestinon as it helped at least to some extent. I postponed starting my residency training until I am better, and I gradually did get better, until those episodes became so rare and only after very significant exertion, that it did not bother me any more. I also gradually stopped taking mestinon.

For the next 15 years I was practically healthy. Until 6 years ago, when I started having intermittent episodes of shortness of breath on exertion, which were initially thought to be asthma, but within a few months my pulmonologist thought it was respiratory muscle weakness. This time I had not only RNS but also a new test- SFEMG and also more extensive serological tests (not only AchR but also MuSK), as the neurologists that saw me were sure it was MG. Again all my tests came back negative, and as my symptoms were not entirely typical either, I was told to wait and see what happens. I think they were hoping that it will all dissapear. Again mestinon helped tremendously but only for a few months. so, a few months later I found myself in the ICU with the diagnosis of myasthenic crisis, unfortunately not made by an MG expert, but by the head of the ICU.

I had a dramatic response to plasmapheresis, which lasted for a very short period. I was diagnosed with MG on clinical grounds, because there was no other possible explanation for my symptoms, but as I did not have a significant response to any other treatment (except plasmapheresis, which was not practical in my case), this diagnosis was questioned again and again.

It took about 3 more years before I was eventually referred to a large MG center. By that time I already required intermittent respiratory support and help in most daily activities. There I was diagnosed with MG based on direct measurement of respiratory muscle force, and later also anti-MuSK antibodies that were detected using an experimental method. I was started on high dose steroids which led to a significant deterioration in my condition. I was nearly bed-ridden for the next ten months until I gradually recovered from this worsening, which was not transient as expected. For nearly a year I required injections of neostigmine.

At some point, I was started on albuterol, which led to significant improvement, and lately ephedrine was added as well. I no longer take mestinon or any other medication except for those.

My symptoms change during the same day, from day to day, or even from week to week. I can go from being able to walk a short distance on my own, and not requiring respiratory support, to being nearly bed-ridden and hardly able to breath on my own. my more severe episodes can last from a few hours (0r even less) to a few days.

I hope this helps you in some way.