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Quote:

Originally Posted by Annie59 (Post 710913)

The best test I had to help clarify my symptoms early on was a pulmonary stress test from the lung fella I have now. He was the one that said after you need a really good neuromuscular specialist soon. 4 months later I was in hosp with the MG crisis. One of the most honest neuros I had early on said I dont understand those when I showed him the really bad NIFs I had when I first went into the hosp in July 08. My currrent neuro takes no stock in my breathing probs or she would have admitted me the last time she saw me. You need a lung doc. Sooner the better I agree. If not for the advocacy from my lung guy and him knowing how I struggle and that this is real and not simple fatigue or depression I would have been dropped by now.

Oh by the way do you all know about the counting test for breathing here? I use this at home to gauge mine. You take a full breath in and count normally out. Be sure not to count faster. This is a bedside test a neuro can do. One of the first student did that with me. I was at 16 when they admitted me. Supposedly at 10 one should be in ICU.

Annie59

Annie:

Can you explain the counting test more? When do I stop counting and what am I counting? Thanks!

Annie59, Are you talking about counting respirations?

Guys, any pulmonary situation needs to be assessed by a pulmonologist. Don't "trick" yourselves into thinking that some breathing respiration algorithm applies to MG patients or to all MG patients. We are all different. Some people can do just fine when their breathing gets worse but others cannot.

You need to have a discussion with your pulmonologist about this, not your neurologist. Why? Because they are two distinctly different specialties! MG involves both specialties, especially when breathing gets worse.

I hesitated to post some information because I don't want it to be a substitute for doctoring!!!

In an MG crisis situation, neurologists, along with pulmonologists, look at a variety of issues. It's good to learn about all of this but the BEST way to decide if you need to go to the ER due to poor breathing or increased generalized weakness or inability to swallow is the fact that you have those things going on!!! And "relative weakness" is as important as absolute weakness. If you are relatively okay and you get weaker fairly quickly, even though it's not severe yet, that is a reason to go in too!

Annie

http://bcs.medinfo.ufl.edu/sample/page04.html

http://www.neurologyindia.com/articl...ulast=Aggarwal

http://books.google.com/books?id=fhY...ations&f=false

http://emedicine.medscape.com/article/1171206-overview