so here it goes anyway: What does it feel like if you start to have trouble breathing? I ask because I have asthma along with the MG and sometimes I feel like a strange flutter in my chest with some heaviness and it seems to be a little harder to catch a full breath. Can't decide what it is. It never lasts very long but does worry me sometimes since I don't really know what it would feel like due to MG.

Thanks for the help!

Elanor

I get flutters in my chest, but it's not followed by heaviness.

When I have difficulty breathing, it's usually at night or during exercising.

Elanor,

I can't say exactly what your chest heaviness might be. I have had palpatations on and off for years. It feels like my heart is doing flips in my chest, I feel a little dizzy and short of breath all at the same time. It only lasts a seconds but it is a bit scary! Make sure you mention this to your MD, it could be something serious like atrial fibralation. Some people require medication if this happens frequently, or lasts a long period of time.

As far as the shortness of breath I usually have problems with the humidity, I feel like there is an elephant sitting on my chest, I get a good air exchange but I tend to do alot of shallow breathign when it happens. I also get short of breath if I talk to fast or too much on the phone, I have to stop myself and take a few deep breaths to feel better.

Rachel

Are you one mestinon or the drugs that are similar? The reason I ask is that I have major breathing involvement and can tell you what that is like. But I also need to say is that the flutter is what for me has been a side effect of the mestinon at times. My body is very sensitive to salt and fluid levels so I think if I am off that is when this happens.

Mestinon has now been tested for POTS which has to do with Tachycardia. POTS stands for Postural Orthostatic Tachycardia Syndrome. Dr Low neuro at Mayo Clinic Minn is the one who has just finished a study on this. (I think it was just finished).

My breathing is so poor today so I gotta go but will check back in with more on what I experience. Right now it fells like my chest is surrounded by walls not muscles to help. It is too much work to breath and sometimes tears come but ya know I have to silently cry as as crying normally would make it worse.

Annie59

Elanor, Usually when asthma is worse, it can feel like your lungs are restricted too. Do you have wheezing that accompanies it? One way you can tell is if you are better on Mestinon and worse off of it or if you are better if you rest. If your breathing is getting bad, you have to call your neuro, pulmonologist or go straight to the ER. You can't always tell how bad the weakness will get, because MG can tank quickly if you are on your way to an MG crisis. The best place to be is with doctors!

You can get "sudden" shortness of breath episodes with MG. With asthma, it usually will only get better if you take an inhaler like Albuterol or MaxAir. I have asthma too and have some triggers that I am aware of. It doesn't hurt for me to take a puff of my rescue inhaler to see if it's the asthma or the MG.

You really need a doctor, or two, to advise you on all of this. I hope you will feel better soon.

Annie

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.

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.

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.

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