This is part of the problem, pulmonologists don't realize the amount of ignorance neurologists have regarding respiratory problems in the disease they manage.

In fact, I myself am repeatedly surprised at how uninterested neurologists are in gaining a better understanding (which I have no doubt they could easily master with a short course, as most of them are highly intelligent people) of those issues.

And I am as surprised at the way they can tell you with confidence in the same sentence that they have no understanding of respiratory problems, yet they have no doubt that you have none which are significant.

Or the way they can repeatedly ignore or distort the advise of respiratory physicians.

What can be done to change this? I am not sure I know, other than (possibly) repeatedly showing them the consequences of the combination of this ignorance and confidence.

I got the same type of treatment with first neruo. He told me it was all in my head after a spinal fusion. I wound up with a 5 level fussion. Exactly what did he this was in my head? I walked out on him when he would not listen to me. I was angry at being treated like that when the pain was over the top. Boy we all like going to the doctor, it is a real picnic, fun fun fun, to be treated poorly has no place in medicine. ginnie

Exactly this. And this is a problem that exists all over the world.

It's just absurd. Even though I "proved them wrong" (it feels weird to say it this way) more then 1 time by eventually ending up with bloodresults like someone with a progressive muscle disorder, or even in a real crisis ending up in intensive care, neurologists are still to ignorant.
If I say I can feel my diaphragm getting weaker, they still manage to say -and believe it themselves- it's in my head. "Nah you're just scared to end up on the oxygen machine again, which isn't weird, you have the right to be scared!" Not until it is proven in bloodtests it is true.

I cannot understand how neurologists can just ignore the reporst of the pulmonologists.

Anyway anacrusis, what did the neurologist say to be disrespectful to you?

My first neurologist said that I was crazy and that I was making up all my symptoms. The neurologist that I use now usually has an office full. There is a 2 hour wait for your visit. All of his patients say that they think that it is worth the wait because he has some respect for human dignity.

I'm sorry that you got a whacko doctor.

I could spend a lot of time saying he said this, I said that, he could have done this I could have done that.
But if we push all those things aside for a minute, forget the inferences, then over here I am left with 2 facts and one assumption:


1. It took 4 years and 8 months to get an SFEMG from the start of my deltoid muscle weakness

2. It took 5 years from the start of my deltoid muscle weakness before a doctor would physically examine my deltoids

3. I am a even-keeled person with a reasonable ability to communicate my symptoms clearly and concisely when necessary


Now for those of you finding yourselves in more critical MG situations makes me think that:

A neurologist should NOT be permitted to diagnose or treat myasthenia gravis without a special license
or extra certification involving praxis at a variety of hospitals with a variety of MG patients

Its like playing French horn or violin in an orchestra, or even any instrument for that matter. There comes a point when
the scientific principles aren´t enough, and you actually have to start listening to nuances, if you are to play really well......


Thanks for asking about the pulmonologist bny & Ravenclaw. I will write that after the second consultation on Thursday.

(The conversation I had with the pulmonologist was actually the one I should have had with the neuro!)


Anacrusis

This seems to be a common problem with Neurologists. Finding the right one is like finding a needle in a haystack. It's been over ten years for me to get a diagnosis and it was from a Rheumatologist. Maybe there's something lacking in their education that causes them to be so dismissive. I'm sorry you had to go through this and I hope you find someone who will give you the treatment you need and deserve. I'm sure there are some good Neurologists out there...somewhere...

If I only knew my current neurologist, I would say that neurologists are smart, caring, open minded wonderful physicians. I would say that they are fully aware of their own limitations and the limitations of their field of practice and are constantly happy to learn, even though they have an excellent foundation of knowledge. I would say that they have human wisdom that very few do.

If I only knew the young and enthusiastic neurologist who wanted to cure my illness with his "magic" after more experienced neurologists failed, I would say that they are immature, arrogant and have no respect for their patients. I would say that they can even treat their patients with hostility when those dare not follow their plans.

If I only knew the numerous other neurologists I have encountered over the years of my illness, I would say that they are mostly caring physicians with good intentions who live in their books instead of genuinely trying to understand the life of their patients. I would say that they are unable to deal with the limitations of their field and their own limitations and therefore tend to blame their patients for their own shortcoming, but as the same time do try to be caring and supportive as much as they possibly can. Telling a patient that their breathing difficulties are the result of their understandable fear and being very supportive about it, allows them to be both ignorant and caring physicians at the same time. It is a good solution for them, but a very dangerous and cruel solution for the patient. If only there was a good way to explain this to them.

My daughter had severe arrhythmia problems. Thank God, a great cardiologist and 2 electrophysiologists got her fixed up and she is much better now.

She started with fainting spells. She was referred to a neuro. He diagnosed a seizure disorder. He prescribed medication. She took the medication. It made her pass out; she fell down a flight of steps; spent days in the hospital; and she decided to quit taking the medication since she was so much worse.

The neurologist stood over her in the hospital bed and cussed her out for "not agreeing to take her medication properly". He sent to to a psychiatrist, who sent her to another neurologist. The second neurologist said that she did not have a seizure disorder.

Round and round we went until we finally found out that she was fainting because of a cardiac problem. My baby almost died because of an arrogant neurologist that wouldn't be called wrong. (Well, my baby was 22 years old at the time. But she is still my baby.) If we had stayed with him, I doubt that I would have my daughter now.

He is an arrogant, incompetent, idiot. Thank God they are not all like that. The second neurologist (who was across the state), was freshly out of school, yet he was willing to stand by his own diagnosis in the face of criticism of the first one.

Is it my imagination or do they steer the bad medical students toward neurology?

Oh my alice, that sounds exactly like my story! Especially the lines I quoted.
I got neuro's getting angry at me, saying I was overdoing things at home so that's why I was so weak. (Of course, though I was lying down all day, I did hoist myself up a few times a day, dragging myself to the toilet, so I probably triggered it all myself )
Or indeed, the same everytime: it's stress/depression/anxiety "which is perfectly normal, I understand it must be hard to cope, you're young!! talk to a therapist, do some coloring, listen to Enya."

I wish to all of us we all get such a nice neurologist as you have now Alice! Hope you, Anacrusis, will meet one too. I'm going to meet a new specialist of specialists soon, so new doc new chance.
But I guess it's a difficult path, which involves a whole lot of getting disappointed, angry, sad, and a whole lot of crying and getting turned down. And not getting much better. Maybe a quest, but then I do want to be joined by a Gandalf or a Dumbledore.

But I guess in the end we can say we learned something (eh, look at me being so positive )

Ravenclaw,

What you say is SO serious and it sounds like they just left you alone with your incredible sense of humor - that is so sad.

Here are my fingers crossed for your new ´chance´ XXXXXXXXXXXXXXXX

Eventually it has to be your turn

Anacrusis