Quote:
Originally Posted by Caprice
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.
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Dear Caprice,
Our stories do sound rather similar. I'm so sorry to hear all that you've been going through! Are you in the U.K.? My pulmonologist ordered a non-invasive ventilator for me to use at home. It is like a fancy BiPAP machine. It helps me breathe at night, and I can also use it during the day when I am having a particularly bad time breathing. I do not use supplementary oxygen, but I understand that you can add oxygen to these machines. It sounds like you could really benefit from such a machine. As you say, it really is frightening when it feels as though you can't breathe. It's scary at any time, but particularly overnight. If you have a pulmonologist, try asking them about this, and if you might be eligible for it. It does take a little bit to get accustomed to it, but it has helped me and I know it helps others, too.
Please take good care of yourself!
Thinking of you,
ErinBear
