TheSwordandTheSpoon's Status Updates

"feel like I need a disclaimer or something similar:This is just reflecting on my journey for a diagnosis. UCM has made a HUGE impact on my life and I feel the need to share. I am not a Dr. The medicines he prescribed are based off of HIS expertise. I’ve been fighting for a seronegative diagnosis going on 3 years and I’m rapidly deteriorating. Im just hoping this helps someone else. Im also struggling to stay employed. Im really really struggling right now. Just hoping I can help someone else.I can also not anticipate how other peoples experiences may be, merely accounting my own. For safety purposes I am not naming the specific dr I saw.
I saw my neuromuscular clinic in Chicago. I had a 4 hour long appointment. He actually read my binder with seven pages of symptoms. He got me in for a facial emg. I was flaring really badly and my eye would barely open. I can’t walk without a cane now so I finally caved. I couldn’t walk across the room. He put me on a low level of mestinon so he could see me on it, and I agreed after expressing my concerns of the first time. He promised he wouldn’t let it happen again and if I couldn’t handle it we’d go off it but he needed to see me on it, so I caved on that to. He called me that Monday to see how I was doing. He says my facial muscles are extremely week and he’s worried about the cysts in my brain. I have an mri and neurosurgery appointment after that in two weeks. He doesn’t agree that we can leave these alone anymore and wants them looked at. And I started crying. He said he’s one of the top neurosurgeons in the country and he was sending him a message about me to look at my stuff while we were at my appointment then. He talked to the other Dr who did my emg. They don’t want to put me through 3 hours of emg because they don’t think I can handle it. And I agree. He said it will probably come back normal anyway. he thinks I may also have a super rare genetic disease because of how fast I’ve deteriorated. (I am NOT fully diagnosed, still have to take the test)I got put on a low level chemo that’s also used as a immune suppressant thst has shown success in seronegative patients. He said if mestinon worked he’d put me on it but I had to have my labs drawn once a week to check my kidney functions. But I’m 85 % diagnosed. If the immune suppression works, he’ll fully diagnose me. But he cares. And I left in tears of relief . I just hope I don’t have to have neurosurgery but if I do I do. I told him this can’t happen to anyone else. But my meds are slowly working. So progress. After years of medical neglect. University of Chicago neuromuscular clinic has been a huge game changer. And I can’t say enough good things about them.
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