Have you had a breathing crisis?
 

1) How was this handled?
2) Do you think it should have been handled differently?
3) Did you see it coming?

Anacrusis

Only one way to handle it. Get to the ER.

scrubbs

I live 30 minutes from the nearest ER, that is if I have someone to drive me.
An ambulance could get here in 30 minutes.
I guess if my breathing stops, I have a problem.

I don't think you go from being completely normal and able to run to being unable to breath.

I believe that every patient who ends up with what is called " respiratory crisis" has enough signs which he (or his physicians) ignore.

I think that any new breathing difficulty in an MG patient should be properly evaluated.

I personally do not like using the word myasthenic crisis.

First, because its not clear how it is defined. (every neurologist defines it differently).

Second, it conveys something which happens, can't be predicted and we have no control over. We can only sit and watch and hope for the best. It also conveys a clear outcome-either recovery or death.

The "crisis" of pneumonia (which was very eloquently described by Hippocrates) no longer exists, because we know how to recognize early signs of pneumonia and we know how to treat it. We no longer have to sit next to a patient's bad and see if he/she turns for the better or for the worse.

Crisis means turning point. The worst point of the illness after which the patient either dies of begins to make a recovery. After a crisis ends the patient may suffer sequalae of the disease but has fully recovered from the disease itself.
It has nothing to do with the respiratory failure which can be brought about by respiratory muscle involvement in MG. A respiratory " crisis" in MG is not a turning point but a severe and potentially life-threatening complication of the disease. Most times a myasthenic crisis does not lead to death nor to recovery. A patient may have more than one episode of severe respiratory muscle weakness during the course of his/her illness.

We do not use the word crisis to describe a severe asthma attack or any severe manifestation of any other illness. Why use this term to describe it in MG? I think it also encourages neurologists to regard crisis as some mystical occurrence instead of encouraging them to have a better and deeper understanding of the full spectrum of respiratory manifestations of MG.

I think it also creates needless and understandable anxiety in patients who feel that without any warning signs they can just stop breathing.
As opposed to patients with asthma who are given clear parameters to follow and are educated how to recognize early signs of danger, patients with MG are not given any tools to recognize or prevent more severe and potentially dangerous manifestations of the disease.

You just made me feel a lot better. I have had a few times when I couldn't breathe, but it was only for a moment. I got better by just sitting down. I do get desperately short of breath with physical activity. Again, this gets better if I slow down.

I have been envisioning this sudden crisis in which I will stop breathing, sit there unable to recoup, and suffocate to death while fully conscious of the entire thing. Maybe this is not so very likely after all.

Thanks for making me feel better.

Celeste me too! Thanks Alice, very helpful info

FYI I read that one way to assess respiratory ability is patient should be able to count to 20 without taking breath (although I cant do that a lot of the time) I am going to keep it in mind when deciding if I need to take a rest (which is really hard because I have always been type to push through and in my mind taking a rest is like being lazy).

In the past, as attorney if I had a court hearing, deposition, whatever- no matter how sick I may feel, I was trained you have to suck it up and show up...not as if you can just call judge and say I dont feel well but that philosophy doesnt work when you have MG.

I cant remember last time I even thought I could run!

Run? What's that?

I am afraid that I am dwelling on this whole thing too much. It probably makes things worse.

I think dwelling on anything too much is not good. I bought a Nintendo ds years ago for the brain age type games and although I have iPhone, iPad and multiple functioning computers at my instant disposal, I make myself play my brain age games when I need to get my mind off something i think it is great for forcing our brains to do a sort of soft reset.

Ps I tried brain age type games on other products and they were not as effective for me, probably bcs with other devices there are too many distractors (how to play, setup, whatever) whereas I can play three brain age games in less than 2 minutes.