I had progressive fatigable weakness in which various rotating myasthenic muscle sets were severely exacerbated by exercise, heat and diurnal variations for over a 3 year period. By the time it all reached a peak I almost needed a wheelchair and could barely brush my teeth or hold a drink up to my mouth. I would get a particle of rice stuck in the esophagus for up to an hour and sound like a drunk by the end of my child´s short bed time story, if I could stay up that long to read it. Mestinon helped tremendously – even at the tail end of all of this whilst going into a slow remission. Here is some of what I encountered as obstacles to diagnosis:

I personally would actually put my own weakness down to´overuse´of muscles at the work place over time and also down to age. I also stayed with a doctor for quite a long time until the final straw for me. Not once was my weakness clinically tested in his office, yet it was gradually deteriorating to the point where I was not able to do the things someone´s 90 year old mother-in-law could do - and I had just passed 40.

MG is a´big picture´disease. A doctor hung up with and scrutinizing only the small details in isolation cannot possibly make a sound diagnosis or refer correctly. Negative tests also do not rule out MG. Unfortunately it is easy for doctors to put patients with fluctuating symptoms into psychosomatic tumble dryers during the diagnostic process. I have been diagnosed twice abroad with a suspected myasthenia gravis diagnosis despite negative tests. Yet when I came home I had to start all over again from scratch. By the time 5 years is over I have gradually gone into remission of all my symptoms all on my own.

So yes! With the success rate in diagnosing MG, it is even possible to go into remission from the disease before you even get a diagnosis for it!

What´s more, for some, the diagnostic process for MG can be so erratic, unpredictable, irrational and demeaning that that process in itself might just be exactly what is needed for you to get that additional psychosomatic co-disease that you never had when you first started with MG and that you wouldn´t have spontaneously acquired either - at least, not until you set foot in the doctor´s office!

Best of Luck


Anacrusis