As a patient it is obviously very frustrating for your illness not to be properly diagnosed and managed.

Yet, as a physician, I know that sometimes this is inevitable, mostly if you have a rare variant of a rare disease, like I do.

Looking back I can forgive medical errors, because I can understand how hard it was for my physicians to reach the right diagnosis with so many things that didn't fit what they knew. With some of the tests that led to the diagnosis of my illness, being discovered many years later.

But, I find it hard to forgive human misconducts, arrogance and humiliation.

20 years ago (in retrospect) I had the first bout of this illness.
I overall had relatively mild symptoms, that didn't significantly effect my life (compared to my illness now), but did make it harder for me to climb steps, play with my son and tell him stories and study for my final exams.
I was hospitalized only one time by a neurology resident who thought I had a severe exacerbation (as I quite suddenly had severe generalized weakness and breathing difficulties).

The MG expert that came to see me within a few hours stopped all treatment (including mestinon) and within 4 days of bed rest I was much better. All my tests were normal and I had only minimal weakness when they examined me.

So, his conclusion was that I do not have a real illness, but "medical student's disease". He said so (not to me, but to those who were in the room) during grand rounds in front of the entire neurology team and my peers that had their rotation in neurology at that time. He didn't talk to me, but about me, examining me (as if I was a lab rat) in front of everyone.
This was a very humiliating almost devastating experience for a 28 year old grade A medical student. Even though I was very glad that I wasn't really ill, didn't need plasmapheresis and steroids, like the neurology resident thought initially.

By his advice, I went to see a psychologist (what else could I do, when I had bothersome symptoms that made it hard for me to do what I wanted and were clearly not caused by any known disease). The psychologist did not think I had psychological problems, but a real neurological disease and urged me to go seek another opinion.

So, I eventually went to see a highly recommended neurologist, who was the head of a large department. When he saw me in his clinic and examined me, in the evening, he said that he has no doubt I have MG. He then said he wants to hospitalize me and do some more tests.

I was hospitalized under his care for a few days, in which he did a repeat EMG, repeat antibody tests and repeat tensilon test. All those were completely normal. He also asked for a psychiatric evaluation, which was also normal.

He then saw me in his clinic and said that although he initially thought I had MG, it now seems that I don't. He said he doesn't have a good explanation for why I am so tired, but I seem to be gradually getting better on my own.

He saw me once or twice again after that. By that time I was getting better. I no longer had to take mestinon and gradually resumed all my activities with no difficulties.

I still remember that last visit in his clinic- He said to me- You are completely healthy, you have nothing to worry about. It is impossible to know what caused this transient episode, but it's not important. Just go back and live your normal life and put it all behind you. You can rest a bit more if and when you feel you need to, but nothing more than that is required.

I still remember how happy I was when he said those words.

Over the last few years, after my illness returned, I have been under the care of quite a few neurologists who treated me quite aggressively. None of them said the truth- I have done my best, but you have an illness that doesn't respond to treatment. None of them said-Let's try and think together how you can best live with that. Instead they said- There is nothing more I can do for you, or even-you are in remission, but you are not aware of it, and go see a psychiatrist because what you need is emotional support.

All, but my current neurologist who clearly said-your have been treated by some of the best MG experts. Your illness clearly doesn't respond to commonly used treatments. I don't have any magic words. You have severe refractory MG.
But then- I am sure we can improve the symptomatic and supportive care you are receiving. And who knows possibly with time this illness will eventually get better on its own. As you know, it sometimes happens with MG.

Physicians can't create miracles, they can make diagnostic mistakes, they can't cure all their patients.
But, they should and can do their best to find the way to treat and help each and every one of them.

I believe that most patients, like me, will be ready to forgive inevitable medical errors or diagnostic mistakes. I believe that most, like me, will not be ready to forgive arrogance, humiliation and disrespect.
I believe that most patients, like me, understand that it is impossible for a physician to know what will be discovered in the future and what currently unknown or incurable diseases, will be easy to diagnose and manage in the 20 years from now. Yet, I believe, that most patients, like me, are not ready to accept that a physician will tell them that what is not yet known, just doesn't exist.

20 years later, I am still angry at that neurologist that humiliated me in front of my peers. 20 years later, I am still grateful to that neurologist that told me to just go back and live my normal life, which I gladly did.
Both had no way to know that another variant of MG, with a much less typical course will be discovered. Both did not have the tools required to diagnose my unusual illness. Both used the current understanding and knowledge in their field to reach a similar conclusion. The difference is in the small details, and in their humanistic skills.