[sunflower1116]

Everyone on here is always warning to "go to the hospital" if you breathing is bad- but can someone please clarify bad?

[AnnieB3]

That's a good question. Is your breathing worse?

You can't compare "bads" and your normal is not the same as someone else's.

Have you seen a pulmonologist and had breathing tests done? Do you have a peak flow meter at home so you can gauge your normal and know when it gets worse? I have a peak flow meter and an incentive spirometer.

Technically, both the breathing in and/or breathing out muscles can get worse. If you "feel" like you are having trouble doing either of those things, you should call a pulmonologist to have tests.

When breathing gets worse, you can get short of breath more quickly. You might wake up from sleeping short of breath. Sometimes it feels like your lungs can't expand when you breathe in. When you breathe out, it can feel like you are "shallow" breathing. And if you try, you can't take a deep breath in and forcefully blow it out.

When MG breathing gets worse, oxygenation often goes down. I have an oximeter at home which really helps me to know how much worse I'm getting. For example, if you know what your normal O2 is, you can see how much it goes down after an activity. It might not.

If MG breathing does get worse and oxygenation decreases because of weak muscles, then the heart works harder to get you oxygen thereby increasing your pulse. So if your pulse while sitting is higher than it normally is, that can be a sign of your breathing getting worse. You'd have to know what your normal pulse is too.

This issue is best discussed with a pulmonologist, in tandem with your neurologist. It's so different for each person. Some people can do fine at, say, a lower O2 rate. Some can't. Or it can be the relative change or drop in how you breathe that is the issue.

I think the best thing is to talk to your doctors. If you are generally more weak and can't take a breath in or out, you should go to urgent care at the very least. But then you could catch the flu and get worse! I don't want to recommend anything, though, because having trouble breathing for an MGer is really all about a 911 call!


Annie


http://www.medscape.com/viewarticle/439041

[cait24]

Sunflower, thanks for asking this question and Annie thanks for your detailed answer.

I used to think when everyone mentioned breathing problems that they meant coughing and wheezing and the inability to take a breath.

I often cough and wheeze and have trouble breathing out. While under medical care (MG not known at the time) my oxygen level is often under 90. So what oxygen level is too low and needs medical care? Is wheezing and coughing enough of a symptom to go to the doctor? How do you go about getting an oxygen meter?


thanks
kathie

[AnnieB3]

Kathie, Wheezing is usually related to an inflammatory condition, like bronchitis or asthma. I really think you would benefit from seeing a pulmonologist. They are invaluable for an MGer. They can run breathing tests to determine the cause of what is going on, including an arterial blood gas to see how poor breathing is affecting your body's metabolism.

I use a Nonin Sportstat. I like the brand because it's dependable and has survived many drops to the floor. The Nonin Go2 is the cheaper version but even that is $99. There are less expensive ones but you should do your research to find one with a good quality. I've had mine for 8 years now and it still works. Amazon has free shipping for many items but you need to check return policies and, again, quality of the products.

A pulmonologist can do an overnight oximetry too, to see how your O2 is while you're sleeping. It usually goes lower while sleeping, even for people without MG, because our muscles are weaker then.

As far as the "cut off" for an O2 that is too low, my pulmy has said that 88% is the point where someone needs oxygen. When I had my crisis, orders were put in to keep my O2 above 93%. It all seems ridiculously arbitrary. If you can't breathe well at 94%, you need help! My O2 went to 66% while I was sleeping during my MG crisis. Tissues are very sensitive to reductions in oxygen, especially the heart and brain.

An O2 under 90% is not great and that is while you are sitting still. How is it while you're moving around? What happens in MG when O2 goes down is that the heart pumps harder to get the body oxygen. That raises your pulse. So knowing what your normal pulse is helps to know what is abnormal. Yes, a heart rate does go up while moving around but if it skyrockets, that's usually a sign for me that my MG is getting worse.

I think that you simply need some more help. So, please, go see a pulmonologist and have them help you!


Annie

[cait24]

Thanks Annie, I have seen so many doctors and have had so many test in the last 6 months, that I am sick of the process. I am on the waiting hold for my SFEMG for 6 months. I have an appointment with my GP shortly, I am going to ask for a referral to a pulmonologist and back to the gastroenterologist while I am waiting for the sfEMG.


kathie

[Tracy9]

I've been in the hospital for over with a week with a Myasthenic Crisis. It was breathing issues that finally brought me to the ER. I came in on the edge of intubation. My NIF was 28 (they intubate at 20-25) and my FVC was <1 (they intubate you at that.) My pulse ox was 91-94, hovering on the higher end of that.

Your pulse ox is the last thing to go, as one of the Respiratory Therapists here told me. By the time that goes, it's too late. Your muscles will work and work and work to get that air in as long as they can. Like others said, your blood pressure and pulse will shoot up. My BP was high in the ER, my pulse was high. That remained consistent for days and days until things improved. (I was not intubated by the way, I felt I could do without it and the ER doctor didn't want to do it unless absolutely necessary of course.)

I had been weak, sick, in trouble for about two weeks. I made a list of all the warning signs so I will take better notice next time, and some I had no idea about. I can tell you when I came to the ER, I knew I was in trouble. I felt as though I just couldn't breathe, and my single breath count was only 5.

A single breath count is when you take in as deep a breath as you can, then slowly count while you exhale as high as you can until you run out of air. Well not super slow. That number is your single breath count. They say under 15 is bad but for me as long as I can make it to 12 I'm fine. 5 was really bad.

If you find you are breathing with your ribs more than your abdomen, your chest wall is staying kind of elevated, you are using your neck muscles, clavicle area muscles, rib cage muscles, etc to breathe, if your ribs and below them or neck etc are getting sucked in while you breathe, those are all warning signs.

Shallow breathing, panting type, fast breathing, feeling air hunger, feeling as if you can't catch your breath, all signs you are struggling. One tip I learned from a fellow MG'er is to exhale all the way, force the air out, a few times before breathing in. It wasn't easy but was a critical help because it got the toxic CO2 out of my body.

I have a lot of info fresh in my mind right now, I need to write it all down while it is still there!