An update, ways to help, images and a poem
A quick update on tests and ways to help, and a poem to accompany a moment from Montana.
Notes on help, meds, and a postcard from -20
Hanna is about to start a new medication, and an MG-specific EMG test happens in early March. We offer some useful resources on "help," and send greetings from Montana, where it is -20F.
Update: How’s Hanna, and doctor stuff
The diagnostic process continues, and meanwhile life goes on. I find the "a monster has moved into the house" metaphor to be useful. Details about ways to support Hanna are coming soon!
Mid-meds check-in
I am doing well. I started full doses of MG meds last week, and feel slightly better. But my energy is zapped. More doctor visits in Feb and March. My three learning edges: income, a web of care, and receiving help.
Diagnosis still in process, and a challenging possibility
Details of what we learned from Hanna's EMG and battery of blood tests. This is probably not Myasthenia Gravis, but the next two weeks are needed to confirm that. There is a much more difficult possibility, uncertain but necessary to begin considering.
Closer to diagnosis
Hanna visited a neuromuscular specialist today. Next steps: a round of blood tests that look for many different kinds of indicators, intended to support or eliminate possible diagnoses. And an EMG test—electromyography—which will happen next Friday. After that, the doctor expects to be able to make a diagnosis.
Next steps toward diagnosis
Continuing to chase a good diagnosis. The following tests are happening between now and the first week of January: CAT scan, blood tests for this and that indicator of this or that condition, an appointment with a neuromuscular specialist for a swallow and lung study.
Closer to diagnosis
I had a good meeting with the neurologist yesterday and they suspect I have Myasthenia Gravis, a chronic autoimmune neuromuscular disorder. I am helped by knowing there is a possible diagnoses. Next steps are a slew of tests, scans and muscle studies to confirm and gain more insight...
Health challenges, and a move
I’m in an interesting time with my health. I’ve been having trouble speaking—making words and using my voice and having enough air for it. I’ve had multiple tests: CT scan, bloodwork and yesterday and MRI which all looks normal. This is a relief and a mystery. Today I’m meeting with a neurologist to see what next steps could be. This is new for me, and it has consumed a lot of my attention...