Down the Rabbit Hole and Back: Part 2

Wow. I thought I would write this second part a month after the last one. It's now been almost two years. Down the Rabbit Hole still seems fitting, so I have no shame in starting my Part 2 now. When I last wrote, I mentioned that I was going to get an EMG done by the Anti-MAG specialist. That visit was pure comedy.

The neurologist was being assisted by a Fellow. She came to get me from the waiting room, led me to the room where they were going to test me, and pulled out a hospital gown from one of the wooden cabinets. She left the room to let me change. I took off my clothes and then proceeded to put on the green and white hospital gown. Or I proceeded to try to figure out how to put on the green and white hospital gown. I could not figure it out. It was shaped like bats wings. There were snap buttons all around the edges, but when I would try to snap the buttons to what I thought was their corresponding half, they wouldn't snap. I couldn't tell which way was up, which way was down, what was front, and what was back. I swear she left me to my own devices for 10 minutes. I started to get more and more panicked. Was it Lupus Brain Fog? Was I just stupid? Was I blind? Was I going crazy? "Oh my God, this doctor is going to come back and laugh at my ass." Literally, as I was still standing there in just my underwear. 

She finally knocked on the door. I had to cop to it. "Sorry, I'm not dressed yet. I don't know if it's brain fog or what, but I can't seem to figure out how to put on this gown." She laughed gently and came in and proceeded to help me. Or she proceeded to try and help me. She couldn't figure it out either! I felt so much better. I mean, if a neuroscientist couldn't figure out how to work this gown, then how the hell could I? "I thought you guys were already testing me," I laughed. I wish I had taken a picture so you could see how bizarre the gown looked. Eventually, we figured out that the gown snapped at the sleeves and so all the buttons for the same sleeve were all on the same edge. We had assumed the buttons were for the back of the gown, so we kept trying to snap one edge across to the other, to no avail. Anyway, there shouldn't be tricky gowns in a brain doctor's office. These patients are going through enough!

That was the highlight of the story. After that, she ran the test, Dr. Expert came in and seemingly to his surprise, the test confirmed that I did have some mild neuropathy in my right leg, something I knew was going to happen because I had been told this by my other neurologist. He told me he still felt that it was too early in my diagnosis of Anti-MAG to start treating me for it because the drugs he would prescribe are very intense and he usually only uses them further down the line. He told me maybe in 10 years. So my other neurologist and my rheumatologist went with his recommendation of taking me off of Gabapentin and putting me on Cymbalta on the theory that the Gabapentin was making my existing tremors worse. I think it turned out he was right. I still get them, but they are nowhere near as constant or as severe as they were while I was on the Gabapentin. Now if only the Cymbalta hadn't made me gain a bunch of weight...that story is for a different entry.

Like I said in my last "Rabbit Hole" entry, I went down the rabbit hole, chasing explanations for these new symptoms, acquiring a couple of new diagnoses, but then being told that it's all still the Lupus and the Fibromyalgia. So I'm back where I started. That whole situation messed with my head a bit. It messed with my head enough that I am still dealing with the ramifications of it almost two years later and that I will talk about next time. And next time will be sooner. I'll make that promise now.

Me around the time of my EMG test.

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