[Annie59]

Today I got my courage up and read the Neuro report form the guy I say a year ago for autonomic dys/POTS. I had read only the summary and it was so ridiculous I didnt read the rest cause honestly I was scared of what else he had said. OH BOY WHAT HE WROTE ABOUT ME!! Now this last year all makes sense. This guy took almost every word out of my mouth and twisted it. He even slammed the the neuro, a very talented movement specialist neuro who was my first neuro cause they had no muscle person (and my internist said she was a good doc). He said that the 'fainting like' incidents I was seeing him for fit with what he read that I was seen for that day!! In other words he thought I had just fainted that day in the shower not had a myasthenic crisis which that doc said I was having and admitted me. He made it sound psych related. She used the word psychgenic repeatedly. I regret the wasted time and trips and hope for my daughter who is so burned out. I gave her a copy of this report and the last one from my pulmo. Putting them side by side you really see the extreme negativity and really lack of professionialism from that neuro, even bias I suggest.

If I had read this report from this doc I would have known there was no reason to continue trying to get diagnosed at the university. It was right after I saw this guy that I did the mestinon challenge with my pulmo that showed obviuos results in their beloved black and white terms. Good timing. I will keep my pulmo there and likely my endo as that is the only place there
is Endos locally.

I think I am in a good place for tomorrow. I just hope my daughter can be available to her fears not her anger.

Annie59

[alice md]

Originally Posted by Annie59

Today I got my courage up and read the Neuro report form the guy I say a year ago for autonomic dys/POTS. I had read only the summary and it was so ridiculous I didnt read the rest cause honestly I was scared of what else he had said. OH BOY WHAT HE WROTE ABOUT ME!! Now this last year all makes sense. This guy took almost every word out of my mouth and twisted it. He even slammed the the neuro, a very talented movement specialist neuro who was my first neuro cause they had no muscle person (and my internist said she was a good doc). He said that the 'fainting like' incidents I was seeing him for fit with what he read that I was seen for that day!! In other words he thought I had just fainted that day in the shower not had a myasthenic crisis which that doc said I was having and admitted me. He made it sound psych related. She used the word psychgenic repeatedly. I regret the wasted time and trips and hope for my daughter who is so burned out. I gave her a copy of this report and the last one from my pulmo. Putting them side by side you really see the extreme negativity and really lack of professionialism from that neuro, even bias I suggest.

If I had read this report from this doc I would have known there was no reason to continue trying to get diagnosed at the university. It was right after I saw this guy that I did the mestinon challenge with my pulmo that showed obviuos results in their beloved black and white terms. Good timing. I will keep my pulmo there and likely my endo as that is the only place there
is Endos locally.

I think I am in a good place for tomorrow. I just hope my daughter can be available to her fears not her anger.

Annie59

Dear Annie,

A few years ago, a young girl with cancer was given a wrong dose of one of the medications. She developed a severe and very unusual reaction. Her concerned patients called the nurses and doctors, who examined her, found nothing wrong, and calmed the worried parents. But, the parents were still very concerned. they called the staff again. they asked that a senior physician will see their child. The senior physician came, repeated the same routine and left. The parents were very happy to see the head of the dept. come a few moments later with a group of students. They begged him to do something. they said that they know their daughter and are sure that something is very wrong. The head of the dept. looked at the worried parents and then referred to the students that were with him-you see, he said, becoming a physician you have to learn how to deal with hysterical parents.

A few hours later, way too late, the mistake was finally recognized by one of the nurses. the child recovered from her cancer, but remained paralyzed.
This story appeared in a newspaper, and I wrote a response then-

I said that it is time to return hysteria to the history (where it belongs).
It's an entity that doesn't exist and serves as an excellent tool for physicians to hide their ignorance, think about their patients, avoid the true need to be their with their patients and their families and support them, while acknowledging the normal emotional reactions that accompany such an illness.

Ironically, a few years later, My husband and I were treated in the same way, in one of the best MG centers in the world. And even though I understood after a while, exactly what is happening, there was very little I could do about it then.

During our training as physicians we are brought up to be humble in front of our patients and yet sure of ourselves and confident; very knowledgeable and updated and yet realize the limitations of this knowledge; take full responsibility over the care of our patients and yet make them full partners in management decisions; fight and make every possible effort to save the lives of our patients, and yet be able to be with them even when all this fails; be very cautious and do what ever we possibly can not to miss anything of importance and not to make mistakes, and yet be ready to admit our mistakes honestly to ourselves and our patients; be very sensitive and caring, and yet not let the suffering we see each day take over our lives.

being a true physician requires all those seemingly contradicting traits and abilities. while, at the same time there is enormous pressure from health care organizations, pharmaceutical companies, peers, academics that may not be to the best interest of our patients.

this is a pretty impossible situation to work in, and every physician finds his/her way to deal with it. The easiest way is to adhere to certain "guidelines" and "boxes". decide that what doesn't fit, for all practical reasons doesn't exist. As one of my physicians honestly told me- I don't have the time to try and understand the unusual illness of one single patient. (this patient happened to be me). so, he did what he could within his "boxes" and all the rest didn't matter to him. Others were less honest (with themselves and with me) and just decided that since I have symptoms they have never seen before, it is impossible for them to exist.

The little girl that received an over-dose of her medication had a reaction they have never seen before, because it is (fortunately) extremely rare to give this medication at such a dose. Instead of understanding that such an unusual reaction requires a very extensive thought process, they decided that since they have never seen something like that, it just can't be.

The same happens if such physicians encounter a patient with an unusual antibody, unusual genetic abnormality, or any other unusual thing. they may be excellent physicians as long as patients have what they know and have seen (which is the vast majority of the time), so they learn to see themselves as such, making them even more arrogant and close minded to what they don't know.

The bottom line is- when you have a rare variant of a rare illness, stay away from those famous world-leading experts, and look for those that care about you as a person, as a patient and want to do their best to help, if you do or you don't fit their nice tidy box. there are many physicians like that out there. they are just less known, as they don't use their time and energy to make a name for themselves. they just treat their patients.

This is at least the conclusion I have reached. I can tell you that when I finished my fellowship I was offered a position in a very prestigious academic hospital. I was very tempted to accept that position, but then I went on rounds with the head of my dept. we reached the bed of a very ill patient who no longer responded to chemotherapy. he lay in bed-very slim, weak and frightened, and yet trying to keep his dignity as a person. The kind of patient that many physicians would not stay more then one minute next to their bed, as there is nothing to do for them anymore. The head of my dept. took a chair and set next to his bed, held his hand, and talked very softly. The patient said- I am scared, and the head of my dept. leaned down, hugged him and said-don't worry, I will be there with you. That was the moment I made my decision.

When I became ill, I initially took the same approach, and saw a neurologist in a regular out-patient clinic, but he decided to refer me to an "MG expert". my mistake was that I kept on looking for better and more experienced "MG experts"(such as the one Chloe Atkins describes in her book), instead of looking for a good and caring physician. One that will take care of me as a person. One that understands that trust and respect go both ways. one that is not intimated by my knowledge, but harnesses it in finding the best management approach. one that knows enough, but also knows the limitations of this knowledge. one that does not think that what he has not personally seen in the exact same way, can't exist. one who is not too busy, and still has time to listen to , think about and take care of his patients.

This is the kind of physician you should be looking for, not more and not less.

alice