I doubt that Kaminski will disappoint! But I don't think you should wait that long for care.

You really need to be in a hospital. In that situation, having "approval to live," er, to have IVIG will be easier. If you are that bad off, you need more care right now.

Tests that should be done are a neurological exam, pulmonary function tests (MIP & MEP), arterial blood gas, CBC, O2, ECG, and whatever else they need to figure out why you are doing worse and to gauge the degree of exacerbation.

It's entirely possible that you have something else going on. Many of us have other AIs, such as thyroid conditions. That could make MG worse.

Do you have any signs of being sick? If you go anywhere, you have to wear a mask. You can't afford to be sick on top of this!

Sleep is important, but you need help with how badly you are doing. Not to scare you, but you can get to the point of needing intubation or a BiPAP. Muscles become weaker while sleeping. Who knows what your O2 is while you are doing that. They may need to do a mini-sleep study or overnight oximetry in the hospital too.

I'm so sorry you are doing poorly. In your situation, 911 is your best friend. Do you have a hospital close to you, where they know and understand MG?

I hope you'll be okay!!!


Annie