Oh CR*P! ......

And shame on that ´brainy´ guy

Am sending you my private email would like to keep in touch this week

Hug

Anacrusis

Do you want an honest answer?

It's option A. I know it is hard to accept the fact that your life depends on them.

I think you need to insist in every possible way that they send you to a proper respiratory expert, who can evaluate your respiratory condition.

Don't argue with their " diagnosis", just insist on what you need and want (they can think what they want and will do so anyhow). Don't argue with their " normal" neurological examination. Don't argue with their " pattern". Don't try to be a " nice" patient.

Jana

Did MGers die from MG?

One died from complications caused by plasmapheresis, one apparently died from meds given for another condition (meds that were contraindicated in MG), and the other died from respiratory failure (this person was also elderly and was not agressively treated). As far as I know, NONE of the obits or medical records said "death due to MG" -- but, IMHO MG WAS the cause...........directly or indirectly.

I'm on Google alerts and get obit notifications rather often that DO say cause of death was MG.

In 2006 my Mom was in hospital for a minor operation. She had been DX with MG just a week before but in my opinion she had it sometime before. She had neck and swallowing issues at least a year before. We took her to several neuro's and the most we got was she was de-conditioned. Anyway when they put her under for surgery when she came out she couldn't ever breathe on her own and we lost her. So I would say she died from MG but her DC says "old age"
Mike

Before there was the ability to provide respiratory support the death rate from MG was about 30%.
In patients who had significant respiratory symptoms it was nearly 100%.
I believe this is also the source of the scary name of myasthenic crisis.
At that time it made no difference if you recognized early signs of it, because there was nothing you could do anyhow. Physicians could just hope that their specific patients belonged to the 70% who would do reasonably well.
The word " crisis" was (I believe) coined by Hippocrates to describe pneumonia before the era of antibiotics. All a physician could do was sit next to the patient, hold their hand and hope that they will recover from it.

This changed dramatically to less than 5%, once there was proper respiratory support using mechanical ventilation. (it also led to many needless intubations because of the fear of rapid respiratory deterioration).

Assuming that MG remained the same disease, it is reasonable to assume that patients with significant respiratory symptoms, who are left untreated would die just like they did before.

This also means that if a patient with MG dies because of respiratory failure, it is quite likely that he/she did not receive proper treatment which could have saved their lives.

This doesn't mean that if a patient with significant respiratory symptoms doesn't have severe and rapid deterioration, it is not serious and can't be due to his illness. The respiratory symptoms of MG are fluctuative (just like all other MG symptoms) and patients can have continuous worsening and improvement. They can be on the verge of requiring respiratory support and then recovering with rest and medications. There is no need to wait for that one time in which they will have more persistent respiratory failure.

If the cause of respiratory problems such as shortness of breath on exertion is MG, what can a pulmonologist do other than the same treatments that are already being done for the MG? Does it make any difference?

That´s a good question. Don´t know but I´m hoping that an astute pulmonologist would be able to assist in the diagnostic process and help propel the other doctors into an appropriate course of action for treatment and also provide base readings for measuring fluctuating respiratory function. The breath count only does so much. I know of a few seronegatives who are hopeful for an MG diagnosis via a pulmonologist.

If you have a good neurologist and you only have mild respiratory symptoms, and are receiving adequate treatment, you probably do not need a pulmonologist. (although it is probably good to have your baseline levels of respiratory tests).

If any of the above is not true, than a good pulmonologist can probably save your life.

IMHO, anyone who has BULBAR symptoms needs to have a pulmonologist "on their team". The potential for a respiratory crisis is ALWAYS there. Waiting UNTIL the crisis means that your fate is in the hands of whomever is on call at the hospital ER.........a chance I'd rather not take.

Of course I realize THIS is how it WORKS in the States (ER docs, etc.). Alice may experience something totally different where she lives.