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:

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...

Neurologists...
 

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?

Awful, Just awful
 

Dear Anacrusis:

So sorry that you had to have that ugly experience. So glad that you had the other kind.

Are you able to find yourself a replacement for that one? I hope so. Every human deserves to be treated with respect, especially from a health professional.

Chalk it up to another experience that will be added to the colorful fabric that is you and move on. May to morrow be brighter for you.
Jenan

Anacrusis, I know it sucks but sometimes things happen for a reason. Hopefully you can have even more proof of whatever is going on when you have the breathing tests. When you have more proof, you can show a neurologist that you weren't "making it up" and that you need more than make believe doctoring.

That's why I push for people to see other docs like a pulmonologist. The right specialist can make all of the difference. I hope yours will be able to help you as mine did.

Annie

a REGULAR neurologist: :Clever:


The neuro is the gatekeeper to the only two myasthenia specialists over here. I wanted a safety net in case things ever get worse again
(being out of breath before the end of a short sentence, unable to finish a round of applause due to deltoid weakness etc etc)

I´m afraid I´ll have to leave them all behind in the Emerald city where they belong and find an ordinary private neuro
since it seems like a neuro with a good attitude will get me further than one that already knows everything.

Southblues, I don´t think that neuro was a whacko - just a classical neuro fit to deal with classical diseases with classical presentations.
But thank you for supporting me :icon_redface: I did actually appreciate that!!

Those are horrific situations you describe, Alice, Ravenclaw and Southblues with your daughter.
I can just see you using incredible survival instincts and imagine how others may not have been so fortunate
because of a combination of mediocre medical intervention and simple bad luck.


´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.´(Alice)

This is exactly how I feel about being told that the Mestinon working is just my imagination and to just keep taking small doses if
I really thought it was helping me. Over the years by the time anyone suspected anything, myasthenia had gradually had time to
slowly crawl into new muscle areas including trunk, neck, swallowing, breathing and finally eyes (which seems like the opposite
progression to the usual one) I can see if things were to ever get any worse I may run into big problems with my local hospital if I am unlucky.

Quandry, what do you think is the reason it took so long for you to get diagnosed?

Alice suggested it was a good idea to get my normal breathing tests during a good time then they can be used as a reference later on.
So the ones I did take were normal. (no MVV taken but a free asthma and allergy test included)
I did like the feeling of a little squirt of Ventolin making you breathe so effortlessly all the way home.
I´m coughing intermittently on my saliva and I went to the dentist and found I could no longer swallow unless I lifted my head
all the way down onto my chest, but yet I was still able to get home and eat my food without problems.
So my symptoms are very light and my breathing feels normal at the moment.


Thanks Annie you make up for at least a 1000 neuros and their stagnant attitudes :)

Thanks Jenan for that lovely note. I do appreciate my new coat of many colors! Hope to hear your story one day :)


It just fits to write and end on a positive note, today.....

a GREAT pulmonologist: :winner_first_h4h:

• I saw him on google and was able to predict from the photos and all the info and research that this would be a good pulmonologist
  even though he was not a NM specialist (there are no private ones)

• He was interested in Mestinon working on parts I did not expect it to. He was not surprised it worked on my breathing

• He was not surprised that less than 2mg of sedative contraindicated for MG could in very rare cases like mine cause breathing,
  swallowing and severe choking problems. He said that the fact that my 10 rechallenge doses caused consistent delayed payback
  symptoms therefore it was highly unlikely to be of psychosomatic origin

• He was the first person to understand when I described a recurring pattern:
  Sedative followed by restrictive breathing followed by severe general limb weakness

• This pulmonologist was the first doctor in four years to show interest in when it was that respiratory difficulties actually started
  (during 9 courses of consecutive antibiotics) He was also the first person to ask why I actually needed them

• My description of breathing issues and head falling down on chest onboard an aircraft were referred to as neuromuscular

• I mentioned Alice and Annie´s info (without naming them) and he was really interested in that and also in how much I had done on my own

• He was an instigator/researcher/original thinker as opposed to an ambitious compliant academic

• He told me to get another neuro (in a way that I realized he wasn´t saying those words for the first time....)

Thank you,

Anacrusis

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 :confused:)
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 :winky: )

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 :circlelove:

Anacrusis

It took so long because One Neurologist thought I had MS, and refused to believe it could possibly be MG even though I showed no lesions in my brain from several MRI's and even though I was positive for modulating antibodies.

It took so long because another Neurologist thought I had Muscular Dystrophy. I had a muscle biopsy which was negative but I had Malignant Hyperthermia from Propofol. A bad reaction to a supposedly safe anesthesia didn't set off any alarm to the Neurologist and so my GP told me to come back when things got worse. I don't know if this reaction is MG related but I think it at least deserved some kind of explanation especially when the surgeon and anesthesiologist are standing over me when I wake up and tell me they almost lost me.

It took so long because I gave up for a while because I was tired of taking all the tests without any results.

It took so long because when I finally made an effort to see the first Neurologist again he ordered the wrong tests and never followed through on doing the right tests. He diagnosed me with Trigeminal Neuralgia without solid evidence and said that I didn't have MS after all. So I asked him "How can you diagnose me with Trigeminal Neuralgia without evidence and say that I don't have MS because you don't have evidence." He said, "I know you have Trigeminal Neuralgia because of where you're pointing to on your face." Even the Radiologist commented on his report that an MRI with contrast should be used to confirm Trigeminal Neuralgia and yet he never ordered the one with contrast. He then tested my thyroid which was normal and he did this because my body temperature was 95 to 96 degrees chronically. His paperwork was inaccurate - his paperwork said that I had a stroke, which I never had. I brought this up to my GP and she sent me to another Neurologist who said she would send me to an Ophthalmologist and a Rheumatologist. After a couple of months I didn't hear from any of those doctors so I called the Neurologists office. The front desk said they never received any notification to order these doctors and that they would leave a message with the Neurologist. I waited a couple more weeks and still no response so I call again and get the same run around. At this point I wasn't going to waste my time so I gave up again. About a year later I called my GP and she referred me to a Rheumatologist who specializes in Autoimmunce disease. This Rheumatologist gave me several blood tests and found that I was positive for Modulating Antibodies and he said that I have MG.

It may have also taken so long because I was a heavy soda drinker and the caffeine may have caused my tests to be negative. I saw a list of foods on this site that also act as an anticholinesterase and noticed tomatoes. I eat a lot of them too. I no longer drink sodas and occasionally drink tea, but the amount of this anticholinesterase must be low enough to give a positive result.

It may have also taken so long because I have so many symptoms, some of which I don't think are MG, but maybe they can isolate the MG symptoms now and figure out the rest.

I am STILL cross....
 

How can a neuro who.....

• Never bothered to look at any of my concise notes on a 2 month Mestinon trial.....

• Never bothered to observe me whilst taking it.....

• Cut me off in the middle of my description about its effects.....

Make a judgement about Mestinon working in my imagination? I am 100% positive that he would have believed it was working beautifully - had the SFEMG been positive!!!!

Thanks! I just wanted to write that and process it out, since if I ever write about Mestinon again then that would always have been niggling at me every time a Mestinon post would show up!

Now it is said, and done :)

I am sure you are right.