Awful, JUST awful
 

This week I had two appointments.....


One was with a neuro and went like this:

Finding fault + suspicion + dismissive of experience + extreme disrespect towards patient

One was with a pulmonologist and went like this:

Finding facts + trust + inquisitive about experience + extremely respectful towards patient


So it got better, but not until after spending one day in shock and wanting to crawl into a hole and just stay there,

Thank you for listening.......


Anacrusis

yes, this has been my experience for many years.

I had two totally different diseases:

One was a serious life threatening illness, managed by respiratory physicians.

The other was a mental illness which made me think (and being a smart physician convince respiratory physicians) that there is something seriously wrong with me.

I wish we could say or do something to make it better.
In any case, we hear you, and understand your frustrations.

:grouphug:

sorry it went that way... I tell my hubby a lot.. sometimes, ,well many times when I know I need to go to an appointment and see one of the many dr's.. I just dont' have the mental energy (nor physical).. to deal with wasting all the time waiting there just to have a pointless appointment where I just feel crazy... and I also tell him, I wish that it was only i my mind- that would be GREAT!!! It's hard to find a dr you really cllick with!

What did the pulmonologist have to say?

How awful! I can't believe this happens over and over again.

By the way, a few years ago I had the exact same experience. The neuro said I was I was exaggerating, the pulmo said I was going downhill and really needed respiratory support soon. At the same day! So what did they do: they argued about me (she's just has a lack of initiative versus she has a serious illness which gets worse by the day!), above my head (i was lying in the hospital).
I was soooo upsaid, because, it's a neurological disease so they took the neuro's opinion more seriously. With a bunch of co's and nurses watching.

They left me, conclusion the pulmo didn't know anything about MG and i was a faker / depressed little girl. I was in shock, and when my family came to visit I cried soooo much.
(That was my "luck": all combined it caused me to havea total crisis, so they could say it was my lack of initiative that I turned blue :p)

I do understand how awful this is. Maybe you can get the pulmo's report and take it to another neuro?
What was your result of the pulmotests?
By the way, I learned that mg can cause fluctuation in your breathing problems, so having a normal bloodresult (co2 o2 po2 etc) doesn't exclude breathing problemes.

:grouphug:

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.

Re: about neurologists
 

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:grouphug:

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 :hug: