Having a letter from my Neuro ready to give to ignorant ER doctors is a GREAT idea! Thank you for that eye opening suggestion.

I had given up, as everyone could probably tell from my previous post. Two weeks following my last monthly IV infusions, I noticed my arm and limb weakness were not quite as bad as usual and no slurred speech or swallowing issues. As the days went on, I could feel other MG symptoms being milder. The most noticeable improvement was being able to walk around my house without a walker or cane, which is huge. Now, I still have targeted weakness if I push it too far so I’ve been careful to rest when I feel myself sliding. At night, when I’m just plain worn out, I’m having difficulty breathing if I try to talk or exert myself. So far, this improvement has lasted 11 days.

I can’t wait to discuss this improvement with my Neurologist later this week. I honestly don’t know if it’s the Cellcept finally kicking in ( 5 months) or if it’s due to the IVIG. My continued breathing weakness is a bit concerning but it’s not at crisis level. Yesterday, I noticed that I couldn’t sing a song out loud which was playing on the radio! I got winded and had to stop.

Barbi-girl