Awful, JUST awful

[Quandry]

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...

[alice md]

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.

[southblues]

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?

[Jenan]

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

[AnnieB3]

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

[Anacrusis]

a REGULAR neurologist:


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 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:

• 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

[Ravenclaw]

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.

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 )

[Anacrusis]

Originally Posted by Ravenclaw

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.

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

[Quandry]

Originally Posted by Anacrusis

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

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.

[Anacrusis]

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