I just knew it would end up like this. The young woman neuro was too nice for belief. She was concerned that I was numb and weak. She acted surprised I was no longer getting IVIg. She made it sound like she thought this was an episode due to MG, rather than a stroke. She asked a bazillion questions. I had hope that someone was actually going to help me.
By the time she came back several hours later, she acted very differently. She had gone through my records at that hospital and seen that her colleague decided I don’t have MG….that I have conversion disorder. She decided he was right. I guess they ran out of alternative diagnoses. In the past they have said I was “tired”, having a panic attack, have Munchausen’s and then conversion disorder popped up.
I pointed out that I immediately went to a psychiatrist after the Munchausen’s ER visit and the psychiatrist thought that was a ridiculous diagnosis to give me, and I don’t have it. And I said that I had continued to see my counselor for more than a year now. He submitted documents to the court saying I do not have conversion disorder. He got a degree for that stuff. I thoroughly realize this hospital will never change their tune. If I had thought my numbness today was an MG thing, I never would have gone to that hospital. At this point it would cause all sorts of problems if the bad neuro who testified against me in court was proved wrong. Can you imagine? He would be in deep doo doo.
The pharmacist had to take a pic of my Mestinon bottle before I could take a pill. He told me the neuros put a MG patient into cardiac arrest last week because they gave a guy too much IV Mestinon too fast. Any idiot can Google it. Conversion of PO pyridostigmine:IV pyridostigmine is 30:1 That means if I am taking 30 mg of Mestinon in a pill, I would only need 1 mg of the IV version. They gave IV Mestinon to the patient at the same strength as pills 😮 Makes me glad they did nothing to me!
So my discharge papers include “Understanding Functional Limb Weakness”. That’s a less controversial way to say conversion disorder. They want me to see another psychiatrist. Gladly! If I’m really crazy and don’t have MG, that means I could wake up one day and it would all be gone 🙂 And if that hospital’s neuros are the jerks that sooooo many people believe, yet another psychiatrist will say that I don’t have conversion disorder. Win, win….right?
You would think my past good Muscular Dystrophy Association neuros would have decided I have conversion disorder years and years ago. And how come all those eye docs could measure and show me my double vision? I could go on and on about all that. Decades of proof and treatment.
The whole thing has left me feeling more confused than ever. Who do I believe? The shrinks who say I don’t have conversion disorder….or this hospital with a finacial stake in not treating me?
On the way home, my left leg fell off my wheelchair’s foot platform. That has never ever happened to me before. I had a heck of a time getting my leg back where it belonged. When I had missed my Mestinon dose by half an hour tonight, only the left side of my tongue and face got fasciculations. Another thing that had never happened before. Am I supposed to think my body faked all this???
A very long, very frustrating day. As usual, I am beyond confused.
Ohhh! And when the neuro came back….she said she didn’t think I have droopy eyes. Really? They annoy me almost every day of my life! I lift my brows and the lids just stay drooped. Stupid fluorescent lights made me red faced.
I look like a classic MG droop. How does that happen? Somehow my brain knew it could fool everybody by faking MG? Well….everybody but the super smart doctor sleuths in Utah.
Can you even begin to imagine how confused you would be if you were me?
My oxygen went down to 73…might have been lower. I got tired of looking. The alarms were constantly going off. There were the regular obnoxious beeps and the ones that got louder and louder over time. One nurse got mad that they were going off, so he put oxygen on me. After I used the bathroom and came back to get hooked up to all the wires, another nurse acted annoyed that I wanted the nose hose back. The neuro was so invested in me having conversion disorder that when I asked about my oxygen sats, she just sputtered and said it should have been addressed by the ER staff. Ya think? Isn’t that why I was there? Sigh……