Quote:
Originally Posted by ErinBear
Yesterday, I went to the ER for problems related to my myasthenia gravis. I was having a lot of trouble breathing, along with great difficulty walking, swallowing, more trouble with vision, and so forth. My internist said I should go to the ER.
It is hard, because my pulmonologist and neurologist are off for the weekend. They didn't do the tests they should have done. The only appropriate test they did was a breathing test (MIP) which I wasn't strong enough to do. I couldn't get the needle on the gauge to move, so the result was zero. Before, when that happened, they admitted me to ICU. Yesterday, because my doctors were not on call this weekend, they didn't. They said I'd have to wait until Monday, when I should call my doctors and see what they recommend. I have had similar problems before. I have a feeling I need to be admitted, but this is really difficult.
Have any of you run into problems like that when you were having myasthenic exacerbations? How do you work around these problems?
Thank you,
Erin
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I have very similar problems to you. My breathing is laboured. I'm on oxygen. Sometimes it feels as if my diaphragm is not working. I have general muscle weakness and have to use two sticks to walk. I have severe speech impairment where my face muscles are hardly working. The worst is my breathing. Yet my myasthenia tests have proved negative. My breathing tests were declared null as I couldn't move the needle. I also have breath shudder. I have to take mobile oxygen with me when I go out. I just know I shall die in my sleep, even though I use oxygen at night, as my breathing is worsening. I really feel my diaphragm is not pumping my lungs. I've just had a MRI brain scan because the neurologist thinks I might have had a brain stroke!!! I just wanted to sympathise with you and tell you to stay your ground. Ask for oxygen, it helps a little. These people must take you seriously. It's a scary place to be when you are too weak to breathe.