Annemarie, More and more people with MG seem to be having problems with orthostasis (the ability of your body to adjust to changing positions).

The autonomic nervous system is weird!!! They don't know lots about it. It is not a normal thing for someone with MG to have a tilt table test. My cardiologist has been threatening me with one too.

Just have it done. The thing is that it's not what your regular BP sitting around in a doctor's office is that's important in this situation. It's what happens to it when you shift positions. That's why they do the tilt table test. They look for lots of stuff like whether or not you have increased sweating.

Redtail, An increase in heart rate can mean that your MG is getting worse. That should absolutely be reported to your neuro. When the heart can't get enough oxygen, it "speeds things up" in order to get more blood/oxygen to it and the rest of the body. It can also go up during an infection. An increase in heart rate can also mean that you are dehydrated. It usually goes down during overhydration. There are exceptions to every rule though.

Connie, what you are describing is not normal and highly dangerous. Bring this up to your neuro right away. A tilt table test is EXACTLY what you need too. You may have orthostatic hypotension, meaning your BP drops when you stand up. It can be an indication of POTS (postural orthostatic tachycardia syndrome). If your pulse goes up 30+ upon simply standing up, that is one indicator they look at for POTS.

Do you guys have "tools" at home like heart rate monitors, like people use when they exercise? Or a BP cuff? Take your BP/pulse lying down and then take it right after you stand up and then at the 1 minute mark. Connie, if you can't stand up like that without fainting, then just sit up and do it!!!

Geez, guys, I sure hope you are telling your docs about all this stuff. It's NOT normal!

Annie