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.

Well said, Alice.

I have to agree that the most offensive things done to me were via prejudice, arrogance and malicious intent. Though I have to say that the ineffective ER doctors I have encountered were as traumatic to me as well. I wouldn't wish what you've been through on anyone. It's so horrid.

I saw a commercial today for an acid blocker (I won't give them the satisfaction of giving the name of their product here). They showed a doctor in a white coat using a jack hammer. Basically, the voice-over said that you wouldn't want a doctor doing your job, so why would you try to do a doctor's job. My blood pressure nearly skyrocketed.

First, we all need stomach acid. It's natural and necessary. Second, they push acid blockers like candy onto patients without telling them of the consequences like low iron, protein, calcium and B12, increased inflammation and infection, putrefaction of food in the GI tract and on and on. Third, if all doctors actually did their jobs well, we wouldn't have to attempt to figure out our own health problems. Fourth, breaking up concrete is slightly different than doctoring patients! One job works with inanimate objects while the other works with real, animated ones. And the cement's health does not depend upon what the construction worker does or does not do.

I was so utterly offended by that commercial that I feel another book coming on.

Stop trying to control us, drug companies, and start controlling yourselves!

I better stop there.


Annie

I have so many doctors and so many problems, and absolutely no help for anything. If they don't know what it is, they just won't even talk about it, won't even acknowledge that I am asking them about it, just go "hmmm" and move on. So I have "the weird breathing thing", the "dry mouth thing", the "dizziness in my brain, not my ears" thing, the "eye thing", the "perfectly fine but totally unusable knee" thing, the hypersensitive skin (in the area of injury and surgery) thing, the "short of breath" thing, and on and on. Got whacked in a massive car accident, all these "things" are hanging on since then, but no one will even just have the decency to say, I really don't know what it is. They just tell me to go to some other doctor about it (who tells me to go back to them about it), or just say "hmmm", and move on.

If it's not laid out for them on a piece of paper for them, it doesn't exist. Well, I'm not an easy problem, easy test positive, kind of person. All the symptoms in the world don't matter if there isn't a piece of paper to back them up.

Am currently waiting for the results of my bloodtest for MG, and if weather permits, going for the EMG test tomorrow. But quite frankly, it doesn't bother me at all, either way, because I don't expect it to make a darned bit of difference either way. Not like anything is going to change. Not like the doctors here are going to actually DO anything useful for me. If I do test positive, and they do try medication, and it doesn't work out at standard protocol doses, I will be all on my own, again. If I don't test positive, then I just have another weird "thing" going on that no one will address.

Now I'd better stop before I pop an aneurysm and end up completely under their so-called "care".

Thanks Annie,

I agree regarding incompetent ER doctors.
But, as a physician I had the privilege not to have to bother too much about them. (not that having a mini-ICU at home, so that I don't need to go to the ER didn't have a price of its own).

As to drug companies-
It really annoys me when they direct their commercials to patients, who then put pressure on their doctors to give them the excellent medication they have seen. My patients trust me when I explain why I don't give them this new and wonderful medication, and prefer instead to keep them on the old and well-proven one (which doesn't have a patent any more, so obviously not promoted) but I know that not all physician-patient relationships are like that.
I am sure you are going to enjoy this, as much as I did.

http://www.youtube.com/watch?v=ffZUHWG66EA

And you would be amazed to know how many doctors don't bother to read the original articles, but base their management decisions on promotion material given to them by (guess who...).

I am not against novel treatments, but those should be given with some thought process to those who could truly benefit.

But, I better not go into this topic, because I have too much to say...

Annie and Alice, I think that it goes WITHOUT saying that you are BOTH very, VERY smart. I am aware of the people I went to school with who became doctors. I remember their personalities. They were EXTREMELY competetive IN school. Now, I do NOT know if ALL doctors are this way...........but, if they are................is it possible..................

"Some" people who are competetive by nature seem to want to PUSH other people down in order to make themselves seem smarter, better, faster, taller, prettier, more handsome, more desirable.................you name it. Could it be possible that you two have had problems with physicians BECAUSE you are sooooooo very smart........and they have SENSED real intellectual "competition"???

I know that this may sound far-fetched -- and if I am "off-base", please forgive me. I know that you both talk as smart or smarter than my SMARTEST doc -- and THAT is saying SOMETHING!! So, I would imagine that each of you -- especially, being -- horror of all horrors, FEMALE , have made some male docs sweat BULLETS!!!

Anyway, again, if I have been out of line -- please forgive. I've just been wondering if this might be why you two haven't been treated very nicely. Cause you both are sweethearts!! (I mean each of us has probably seen at least one doc we didn't "like" -- but, the doc's treatment didn't rise to the level of "prejudice, arrogance and malicious intent" or "misconducts, arrogance and humiliation" -- I mean, THAT is ROUGH!!)

Jana,

Thanks for you comments,

First, I am glad that it is not common practice to treat people like that. Honestly, after some encounters with my physicians I found myself asking if I non-intentionally do something similar to my patients. I never thought what they did was deliberate or directed against me specifically. I thought it was some flaw I was unaware of in our profession. ( you may find it funny, but I actually asked some of my patients if they ever felt humiliated by me).

I think there is quite a bit of wisdom in what you say.
I can see how a world-leading expert, being baffled by my illness feels uneasy having to admit this to a physician and her husband who is a scientist. It is much easier to think and say in a patronizing manner-patients and their families don't have an insight into their illness. You are in remission and just don't realize it. And then put a big ?! on the results of my QMG score that didn't fit with what he thought it should be, based on the way I was able to push his arm in his office.

And yes, physicians are competitive (me included) but being competitive doesn't mean that you put people down. My competition is (and has always been) with only one person-and that is me- I want to be better tomorrow than I am today. Not only in my knowledge and technical skills, but in the kind of person I am.

I never tried to compete with my physicians regarding our knowledge about this illness. I did try to share with them what I have learned. But, I can see how they could see this as a threat. It was not only my illness that pushed them to the edge of their knowledge, but also ,apparently, me.

The good thing about it, is that due to this unfortunate combination of having a rare and unusual illness and being a knowledgeable physician, I was forced to find a team of extraordinary physicians, who can handle that. I just have to be cautious not to scare them away!

By the way, wisdom is more important than being smart for a physician.
"it is more important to know the patient that has the disease than know the disease". (William Osler).
A smart physician will know the disease, a wise physician will also know the patient.