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Old 10-24-2015, 06:59 AM
juliejayne juliejayne is offline
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Join Date: Apr 2014
Location: Dordrecht, Netherlands
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10 yr Member
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
10 yr Member
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Quote:
Originally Posted by Ravenclaw View Post
Hi, for those who have had a myasthenic crisis, I want to know: did you have any time to let the doc know stuff before you were admitted and treated? Did it go gradually, like getting worse in hours/days, or was it more acute so you wouldn't be able to communicate anymore?

Reason for me wanting to know, is I talked to my doc never wanting to get prednison as a treatment in crisis, since I've experienced prednisone psychosis at relatively low dosage, at least half of what people in crisis get.

However, no one can assure me it will not be given, since it is often the protocol where I live, and in live/death situations they just do it.
So, do you think there is time to let the docs know when you're in crisis, or is this not going to be possible.
I have not had a crisis...YET. However I will relate to you my recent experience.

I went to hospital to have blood taken to check for heart problems, as I am now having constant chest pain. I generally find Hospitals and needles and white coats stressful, but I have gotten used to them over the last 2 years.

Blood test went ok. I even felt ok, and thought that I would be able to walk out the hospital. However, within 20m my legs gave way, and my breathing started heading for hyperventilation. Before I fell I sat, in the main corridor in a busy hospital. Passing staff recognised that something was up, and found a chair for me to sit on. So far so good.

Then, I presume following their protocols, they found a bed on wheels and laid me flat on it. Breathing almost stopped. At that point I was trying to tell them to sit me up, but I had barely any breath, they must have panicked, because the next thing I knew was that a resus team was there.

It took a good 10 minutes for them all to realise that I NEEDED to sit up but to be supported.

This was not a crisis... but I went from walking talking, to being immobile fighting for breath with a resus team around me in less than 15 minutes.

There was no time to check records. I was unable to make them understand anything. So I am now looking for a Medic Alert bracelet. The first thing that Medics do is check your pulse so I am hoping that if they find an SOS bracelet there, they might just read what is on it.

I advise you and anyone else to do the same.
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