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Old 10-31-2010, 04:41 PM #1
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Originally Posted by Annie59 View Post
Annie B3 says it best in that your breathing is not something to speculate about when you are struggling to breath. And if you have asthma which can feel restrictive too that could be confusing. I dont have asthma. When I was first getting treated and my breathing was as much a part of my weakness they tried me on inhalers after I did the home Peak Flow meter study for a couple months. When my internist saw the numbers she called the allergist I had seen to get one for me immediately. But the inhaler never helped. It wasnt until I was in the hosp for a myasthenic crisis for the first time and was given mestinon did my breathing turn around FAST! It was amazing!! I am not big on drugs at all but this drug was a miracle to me.

For me it can feel like a very tight girdle is around your chest not your tummy. I dont were bras even unless I go out as any restriction on worse days is too much for me to add on.

Annie59
Thanks everyone for the responses. I have been wondering if I even really have asthma or if it is the MG. Kind of how I feel about if I have fibromyalgia or is it the MG? I will be seeing some a MG specialist in December and will ask him then.
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Old 10-31-2010, 10:10 PM #2
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Elanor, Please don't expect a neurologist to be a pulmonologist! A pulmonologist is the best person to assess asthma. And a rheumatologist is the best doctor to assess fibromyalgia!!! You have to get accurate diagnosis' from the right specialists. If you don't already have a pulmonologist, get one. They are the ones in a hospital setting who assess breathing, not neuros. So it's good to get evaluated for BOTH MG issues and asthma issues with them. A baseline reading will help them to determine how bad you are getting too.

I hope you will get some clear answers.
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Old 11-01-2010, 04:11 AM #3
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For me it can feel like a very tight girdle is around your chest not your tummy. I dont were bras even unless I go out as any restriction on worse days is too much for me to add on.
Me too!

I feel like I'm saying that too much on this site, but I went so long feeling weird and getting no answers.

Sometimes, I have battles with my bra.
During those times, I choose to wear cami's with a shelf bra, but even those are too much. Well, it's good to know someone can define what I'm feeling.
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Old 11-01-2010, 02:50 PM #4
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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
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Old 11-02-2010, 11:48 AM #5
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Quote:
Originally Posted by Annie59 View Post
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!
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Old 11-02-2010, 03:08 PM #6
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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
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