My life has been changing every few minutes today. It’s hard to keep up with it all. I saw the old guy GP early this morning. I took this video of me in the examination room while waiting for him.
Do I look and sound in good shape to you? The doc was not amused that I wasn’t helped in the ER. He prescribed another Medrol dosepack and is putting me on Methotrexate next week. He had to do blood tests first, to see how my liver is doing.
By the time I got home, there was a voicemail from my “good” neurologist. He said he was NOT the neurologist on call, it was his partner. According to an email from the neuro’s nurse, the partner told the ER doc “to evaluate breathing, weakness, condition, and if needed admission to the hospital or transfer to U of U. If still not feeling well please go to the U of U ER. You need to followed by U of U closely given the complexity of condition and symptoms”.
Ummmmm….it was that hospital where the first Utah neuro said I did not have MG and in their ER, the last 2 times I went in looking and sounding just like today, I was told it was a panic attack and the next time, Munchausen’s. Would YOU want to go back there? Too bad Saturday’s ER docs didn’t follow through with these instructions. It would have been better than nothing. Maybe?
So, the ER docs at Saturday’s hospital lied by telling me they had talked to my neurologist. No wonder the woman ER doc was confused! She had a hard time reconciling my MG crisis hospitalization with being told I don’t have MG. But who told her I don’t have MG? The first ER doc wanted to admit me, but her shift changed. The next ER doc told me there was nothing emergent wrong with me. He said other neuros had said I don’t have MG, so it was unlikely I have MG. None of them tested my breathing. After I was told to go, the nurse asked weren’t they going to give me an ECG? Then he said there were abnormalities. Then the ER doc said I was fine.
Are you confused yet? I wonder how many layers of staff each message went through? It was truly a game of telephone.
The good neuro’s nurse wrote a whole bunch of emails to me today. She said I need a SFEMG at the U. Luckily I wrote back and asked if I was the one who was supposed to call them! She said yes. All the U’s websites give the wrong # for neurology. I got Children’s Hospital. After being transferred to and fro, I finally got the right person. Of course none of these people could understand me on the phone. LOTS of repeating slowly and spelling things out. As if I wasn’t exhausted already! and the biggest kicker? I have been sending my neuro pics and videos for months. Today his nurse said they can’t watch the videos on their system. Uh, thanks for FINALLY letting me know! Gee, do you think that might be part of the reason nobody worried much about me?
Hmmmmmmm…..guess what? More changed medical records. The first neuro I saw there was the one who did no tests, read no records and decided I don’t have MG. I saw him twice. Then my surgeon got me in to see his friend, the neuro, even though it was against policy. Today’s scheduler says records don’t show the first neuro at all, instead it says I saw the second one 4 times. I only saw him once. What the heck???? The reason this is important today is because the neuro who specializes in CIDP and MG and who is qualified to do SFEMG tests, is new to me. That means switching again. The second neuro I saw and the one my current neuro wants me to see, have to discuss me and agree to have me change docs. The scheduler says she will call me back in a day or two. Arggggghhhhhhh!!!!!!!!
Meanwhile, the current good neuro’s nurse keeps sending me emails saying I should go to the U, be admitted and get the tests done in-patient ASAP if I am still struggling. I know from all the past attempts, the U’s ER would come up with some new mental illness to pin on me rather than treat my MG. The “good” neuro has no concept of what it’s like to be me at that institution. He thinks his colleagues will gladly accept that he “suspects” I have MG…..and prove it for him.
There are people in my MG support groups who have positive MG blood tests, but inconclusive or negative SFEMG’s. There are also folks the other way around. Either test should be enough. And there are all sorts of possible diagnostic tests. Just looking at the symptoms used to be enough. Now more and more docs want every lab test positive at the same moment in time. For most people, that doesn’t happen. At the real live meeting, it looked like at least half the people raised their hands when the facilitator asked how many folks were serronegative. Official statistics say 20% are…..or less. For years docs believed there was no pain associated with MG. I think it’s like 80% of MG’ers who say they have plenty of pain from weak muscles. Someone finally studied real people and discovered real pain. Imagine that! We got talking on one support group about how many people experience muscle difficulty with our peeing and pooping mechanisms. A whole slew of people said yes. Literature claims MG does not do that to us. And on and on it goes…..
I wish I could give every jerk doctor a month of my MG. That ought to change their perceptions 🙂
Oh, my gosh! No new phone calls or emails for a whole hour. Whew.
So, to summarize, my new good neuro is still good. He had nothing to do with Saturday. He sounded surprised and apolgetic in his message. I need a very specialized test at the U. I have been on the waiting list for a month already. Sounds like they did nothing towards even scheduling it, let alone getting the test done.
The GP, with all of his years of doctoring, and wisdom gained from that, thinks the quagmire I am in is ridiculous. He thought I should have been on IVIg all along. He was willing to wade into the fray and try to save me. He prescribed what I needed.
I see the good neuro on Tuesday. Stay tuned for whatever the next plot twist is.