Hi. I was diagnosed with MG mid-December, but because of symptoms, I believe I've had it since I was a kid. I've had increasing issues with breathing when exercising (not asthma) for 30+ years, which now leads my heart rate regularly to exceed 190 bpm if I'm exerting myself with exercise (registered as high as 211 bpm). I'm concerned about possible damage I might have done to my lungs or heart from having my heart rate so high.

In November when I suspected MG, I went to the ER because of saliva aspiration & pain in muscles in my chest). I think the test they did is called EKG (where they hook 10 or so cords to various parts of the body & chest) and the reading was normal.

Because of my concerns about high heart rate & breathing difficulties for so many years, my neurologist (who's new to treating MG) is now referring me for an EKG. For those more experienced than me, does that sound like the proper approach or should I point the neurologist in a different direction? Should I be seeing a cardiologist specifically rather than just getting an EKG? Are there any tests I should be doing for my lungs or specialist I should be seeing for that? Thanks for your ideas.

Seishin, Are you being referred for an echocardiogram? That's not the same as an ECG/EKG. What you had in the hospital is an ECG. An echocardiogram is where they put this lovely gel on your chest/heart area and "look" at the heart with an ultrasound machine. You basically just lie there and may take some deep breaths in or be asked to hold your breath a few times. With MG, that can be a little harder to do. If that's the test you're having, just make sure the tech knows that and they will adapt things to your needs.

A neurologist is not a cardiologist. Some neurologists like to think they know everything but it's important to be evaluated by the right specialist if you have concerns. So, yes, a cardiologist should probably evaluate what's going on.

There are so many things that can affect a heart rate. Sometimes it isn't even the heart! The thyroid can affect your pulse too. Do you know what your blood pressure (BP) is?

MG can cause a higher heart rate when it gets worse because the body does not have enough oxygen and the heart is trying to make up for that by beating faster. That doesn't mean that your heart is bad, though.

Has anyone checked your basic chemistry, including electrolytes, liver and kidney function, etc.? They might have done that in the ER. Did they draw blood? Did you get the records?

I always ask for a copy of an ECG for my records. They can print an extra one for patients at the time of the test. They don't normally give it to you until the doctor has looked at it first but they normally cough it right over to me.

Since you are relatively new at MG, you should ask as many questions as you need to. What drugs are you on now? Did you get Mestinon?

I hope this has helped. You shouldn't be overly concerned about what's going on but getting the right help from the appropriate doctor is important. That will reassure you and give you answers.


Annie

Hi Seishin,

I am not diagnosed yet, but have some form of weakness. I also had my heart rate spiking to about the same range as yours with very minimal effort. It took several years to get the help I needed; I learned that you need to be a squeaky wheel with your doctors until you get what you need. If they do a test and it shows nothing, don't just say "oh." Say, "I'm still having trouble, what are we going to do about it?"

I was ultimately diagnosed with dysautonomia. In my case, the high heart rate was not dangerous at all, just extremely uncomfortable. It is also now controlled with medications. The cardiologist did not arrive at this diagnosis until he had ruled out any problems with my heart, including a 24-hour Holter monitor, an echocardiogram (the ultrasound, like Annie described) a CT scan, a stress test with imaging, and ultimately a 30-day Holter monitor.

I tell you about myself to give you some comfort that it might be nothing serious, but you do need to be checked out thoroughly. Also, you could check out dysautonomia (especially "Inappropriate Sinus Tachycardia") to see if it sounds familiar.

Tatia

P.S.- My in-laws have a genetic thing which causes their heart rate to go up as high as 400 to 600 BPM.

If your heart rate is that high, you need to be evaluated by a cardiologist and probably also by a cardiac electrophysiologist. You could be sitting on a potential heart attack and treating it as a neurological problem.

I agree seeing a cardiologist is a good idea.. I have the same problem.. My resting heart rate was in the 140's when this whole thing started and when my symptoms feel bad it's in the 130s.. IVIG has helped everythig, which caused it to lower in the 90s most of the time now.. but they also say I have dysautonomia (they assume caused from the neuromuscular issue)

Thanks, everyone, for your responses.

The neurologist had referred me for an EKG & not with a cardiologist. I don't feel confident in her care (she's nice, but her lack of experience with MG is showing) so I'm going to wait until I meet with the local MG-expert neurologist in early Feb for proper referrals as needed.

My blood pressure has risen significantly this year. Typically, it's been something like 90 over 63 or so. Now, the typical is 120 over 80. I have Hashimoto's as well, so I'll mention it to the MG expert and see what he has to say.

I've gotten & will continue to get records of everything I've had done & will go thru it on a good energy day. I think the liver function number was a little off but it didn't raise the doctor's alarm bells.

I don't know what my resting heart rate is anymore. The heart rates described by Geode are staggering! I've not heard of that before, how does one function...(?)

Thanks for answering my questions, sorry for the slow response. I neglected to mark the thread to notify when there was a response to my question.