Updates from Hanna

A summary of the first visit to the University of Pittsburgh ALS clinic. The nut: Hanna's diagnosis is 90% for ALS. They'll pursue the other 10% while beginning treatment to slow progression of symptoms and prolong life. Also in this update: living with this hard news.

Hanna reports on a difficult week: feeling her failing abilities, getting Covid on the flight from Montana, feeling the threshold of disability.

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.

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.

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!

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.

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.

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.

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.

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...