As I laid awake at 3:30 a.m. this morning, I was thinking back to all the things I had read on this forum, and something came to me that I had forgotten about. I wonder if this has to do with MG. A year and a half ago, I fell and dislocated my elbow. In the ER, my blood oxy fell into the 80s. I was put on oxygen, arm set, casted, and so forth. As I was lying in bed waiting to be discharged, the nurse came in and said you need to start breathing, so I can get a blood pressure. Well, I thought I was breathing, so I started taking deeper breaths, and she stated that was better. In October, after being diagnosed with MG, I had a CT with contrast. After the test, I was lying there waiting for the nurse to remove the IV. Some voice from behind a wall kept saying breathe, breathe, breathe. I thought I was. My question. I know MG affects breathing, but is it normal for a MG patient to breathe more shallow when they are not in a crisis and not realize just how shallow. You don't think about breathing, unless you are short of breath and can't get enough air. Before diagnosis, I could get up at night to use the restroom (approximately 10 steps away), and when I would lie down, my heart would beat so hard, I would lie in bed and count the beats, just because I could feel it beating so hard and could not go to sleep. One night it would beat 10 beats, skip a beat, 10 beats, skip a beat. They usually lasts about 10 to 20 min before it calms down. Is this normal. My cardiologist said the only thing he could find was the top part of my heart was adding extra beats and a beta blocker would help, but I could live fine without it. Is this normal with MG. busy

Well, it's possible it's MG. Did your cardiologist do a 24-hour holter? What tests did he do?

What I think you need to do is see a pulmonologist. Again, don't expect your neuro to be one. It might be time for a sleep study or at least an overnight oximetry. Muscles get weaker when you sleep, so you have to know if you are hypoxic (not enough oxygen) or not. Very bad for the body, especially the brain, heart and kidneys, to be hypoxic.

Sometimes they do an oximetry for 24 hours, to see if you are having dips during the day too. Then the report can be sent to your neuro. Sometimes pulmys do sleep studies, sometimes neuros but an oximetry is usually done by the pulmys. Oy.

You could always ask your primary doctor to make sure other things aren't off like electrolytes or thyroid or other possible causes. Those things can cause you to have arrhythmias too. The cause of arrhythmias isn't always the heart.

Beta blockers are relatively contraindicated in MG. Some people take them but you need to be aware of that. Also, it can be hard to get off of these drugs. So it's best to at least TRY to find a cause, if one can be found, first.

It's harder for the muscles at night to "kick in" because they are weaker when you sleep. It may help to sit up on your bed for a minute before walking to the bathroom. Do you drink water after you go? Being dehydrated is not good for the body. Also, getting up to pee a lot at night could be a sign of apnea or hypoxia too.

When the body can't get oxygen, the heart speeds up to try to get it for you. It's a normal process but it means that something else is going on, like lower O2.

I hope you can figure it out. Whatever is causing your O2 saturation to drop, it's not normal! They body is kind of funny . . . it doesn't like being deprived of oxygen.


Annie

The cardiologist did do a 24 hour holter monitor which showed the extra beats, did a tread mill (I did have a lot of shortness of breath on this and could not hardly answer his questions. Not enough air). I had a ultrasound with IV and I think that was all.

My regular dr also sent me to the pulmo doctor in the same office since she was concerned with my EKG. I had a breathing test done where I inhaled some sort of medication; and then one was breath in and blow out hard as I could, I walked up and down the hall several times to be tested. I did fine on that. He drew blood to check for allergies (I think Img or something). I had a chest x-ray. Everything was ok. My sleep study came back 4.5, which a 5 will give the insurance the ok for a c-pap machine. He said he would round it up, if I thought I wanted to try it. He then scheduled me for a bicycle test to test my chest muscles, but I was so tired of going to the cardio and pulmo all that time, that I did not go back for this last test. All this was done about 8 months before the neuro called me back in for a followup.

About 4 months prior to all this, the neuro took blood. He told me a year later at my followup that the blood work came back elevated, but he pondered on the idea, and decided to see me in a year and check on how I was doing. It was during this timeframe that all the cardio and pulmo and lose of voice came into being. The only meds I am on is Mestinon. I refused to take the betablockers since it was not life threatening. It was a very busy year. That is about all the test I can think of. Thank you for sharing.

Hi busy,

So, are your heart issues still going on now or was this all before diagnosis and mestinon? I was wondering because I had all kinds of strange heart issues (tachycardia, skipping, etc) when I went off of mestinon and now they are better since I went back on mestinon. I went to a cardiologist too and they wanted to put me on a beta blocker or a calcium channel blocker which are both relatively contraindicated in MG. I noticed that the heart issues had started up since we stopped the mestinon and asked to try going back on. Mestinon worked and I am doing well now. My neuro is kind of baffled by that but he is happy to keep me on it since it's working.

debra

Hi Debra,

The heart issues began before I was diagnosed but they were sporatically. It was not every night. However, now, I have noticed that while sitting and watching TV sometimes, I can feel my heart beating in my back and have to change positions so I can't feel it. It nearly is not as bad as it was at night. It gets on my nerves a lot. I have only been on Mestinon since November. I take 30 mg twice a day. I have not had any hard thumping at night since the medicine, but I don't know if the Mestinon helped or not. It would come and go before and I don't remember how long it had been before I started my medicine that I had an episode. You know sometimes when you have something, you begin to get use to it and get where you don't pay as much attention to it. The next day you go on and forget about the night before. What I should have done was to document it for my sake and for information to the doctor. I am glad yours is better on medicine. I guess you are sort of like me. It must all tie together some how and sure is confusing. busy

AnnieB3, what does peeing have to do with oxygen levels? This is interesting.

"Also, getting up to pee a lot at night could be a sign of apnea or hypoxia too."

Annie59

http://www.talkaboutsleep.com/sleep-..._urination.htm

I won't be around for awhile, Annie, so I can't answer any more questions. Sorry.