I went to the ER yesterday because I could not walk and it was very difficult to breathe. My breathing muscles were cramping and spasming. It was very painful to even take a breath. They got me right in. But of course my O2 stats were fine. They did call my neuro, he asked that they do this whenever I am seen in ER. He ordered blood tests, including an ABG(arterial blood gas), chest xray and EKG. They were very attentive and understanding. Best ER doc I have ever seen, was perfectly happy to do as the neuro said.
But naturally they could find nothing wrong. As I was there I did get better, guess the mestinon kicked in. I am taking more than ever before. I have been taking 6 to 8 a day, I started prednisone on friday 40mgs a day, and Imuran 200mgs a day for about 3 weeks. This is the most meds I have taken for the MG since I was dxed. Since they could find nothing wrong they sent me home encouraging me very much to come back if I got worse again. I told him how discouraging it is and he understood. He also made a very valid point that now they have a base line so if I come in again and I am doing worse they can show that and admit me.
Yet everyday I feel like I am just hanging in there. If I go to the store or take a shower(reason for ER visit) I start to have difficulties. Breathing, swallowing, and walking.
I see the neuro tomorrow, for a follow up on the ER visit. How do I make it clear this is how I feel despite all my "normal" test results?
I love this board. You guys are the best! There is nothing like being able to know I am not alone. Thank you all so very much. To all, Have a wonderful weekend and strong, happy days ahead always!
