Did you watch this morning’s video? WordPress says nobody did, but YouTube says 36 people watched it. Anyway, I have been in tough shape for a while now. I made it to the MG meeting. I was bummed I was too weak to eat. I had 3 spoonfuls of a yogurt, berry, granola parfait, but my chewing and swallowing weren’t working. Figures! Free, prepared food and I didn’t eat the lunch.
It wore me out to get to the meeting, then sit through it. I mostly wanted to meet people. That was the best part 🙂 By the time it was over, I had been sitting still in that room for 3 hours. It wasn’t any easier to breathe and I felt like heck. Lots of people had been telling me I should go to the ER. I stopped near it and waivered back and forth about what to do. My breathing wasn’t as bad as in February, but it was getting there. I was wicked bad dizzy and had that stupid numbness right down the middle, on my left side, etc, etc……
The more I thought about making it back home, the scareder I got. I went up to the ER window and they took me right in. That’s when things got very weird. The ER doc called my neuro. My neuro told her I only have suspected MG and that I have not gone to the University for SFEMG, despite him ordering the test!!!! WHAT?????? I told the ER doc about my 5 days in the other hospital, my 5 in a row IVIg’s and the discharge papers saying I have MG with acute exacerbation.
The ER doc then looked as confused as me. She wanted to know if my neuro had known I was getting IVIg’s and if he had visited me in the hospital. I looked at her incredulously and said yes. And we did that back and forth about several other things. I asked her if maybe he got me confused with someone else??? She wanted to admit me to that hospital and transfer me to the U to get all sorts of testing.
Then that doc was done with her shift and a guy ER doc showed up. We went through the same conversations. He basically treated me like a complete and total idiot with no grip on reality. I told him I had to be off Mestinon for 4 days before a SFEMG. He had no idea what I was talking about. He asked what I wanted to do. I said go home!
I am sooo confused!!! What the heck just happened? Did my neuro just throw me under the bus? Why? What has all this got to do with my altered online medical records? Some time, maybe 2 weeks ago, a guy called from the U to tell me they had received a referral for me to get an EMG. He told me when they were ready to schedule the test, another person would call and set it up. I asked him if he was sure it was an EMG? Was he sure it wasn’t for a SFEMG? He confirmed EMG. No one has called me yet. The guy on the phone said it would be sometime in May…..so I haven’t been worried.
What freaked me out was seeing a blood pressure of 260/133. I never remember it being that high in my whole life 😮 Another weird thing is that my d-dimer was perfectly normal. A couple of years ago, that same hospital told me mine was just naturally high and not to worry about it. My d-dimer was often high in the Adirondacks. See? I am cured of just about everything! 🙂 Now I am just waiting to look, sound and feel like I no longer have MG or anything else! 🙂
No one can even begin to understand how jerked around I feel by the health care system.
I am tired to the bone and sore from the effort to breathe. My discharge papers gave me the diagnosis of “weakness”. Good to know what I have been suffering from all these years 🙂 I have a regular doc and a neuro appointment next week. Should be interesting. My medical stuff has more plot turns than any mystery novel. Sigh…..