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10:54am July 28, 2014

So I went and saw my neurologist today.

He says that given my test results and my symptoms, it’s extremely likely that I have either autoimmune myasthenia gravis, or congenital myasthenia.  I asked him if I’m officially diagnosed, and he said that we’re going to treat me as if I have myasthenia gravis, and then see what happens.

That means I’m going to get IVIG infusions for several days in a row.  It apparently takes a week to take effect, and then stays in effect for about 6 weeks.  A month later I will see him and see whether the IVIG infusions have improved things or not.  He’s especially interested in improving my double vision, because that’s my most prominent symptom even when my other symptoms are mild.

If the IVIG doesn’t work, he’s going to consider whether I have congenital myasthenia instead, or something else entirely.

I’m glad there’s the IVIG to try, because the other option was to raise my dose of dexamethasone to suppress my immune system, and I really would rather not do that unless I had to.  I’ve been having problems even when stress-dosing, so I’d rather not add more and more to that.

I really hope the IVIG works, because I’d like a firm diagnosis of one thing or another. I don’t like not knowing, or having ambiguous diagnoses.  I’ve had a diagnosis of “neuromuscular weakness” for way too long, I’d like something definite.