Erin, Those doctors cannot deny you care simply because your neuro is away. You need to have your neuro put in "standing orders" for you in the hospital. That will cut through any nonsense by the other doctors. It has to be in writing!

If you have a prescription, for example, and are in the hospital, will the hospital doctors deny you access to that prescription simply because your doctor is not there?!! No, that would be negligent. The IVIG is no different. It is a prescription. The other doctors have no legal right to deny you access to it when you need it.

But IVIG is a temporary fix to the autoimmune problem. Imuran, Cellcept, and other meds are more permanent fixes. They are a constant dose as opposed to a periodic treatment. Your MG may need a more consistent treatment.

Have they done a complete differential diagnostic process, ruling out other possibilities? What about other disease states, such as a thyroid issue? I'm sure you know that people with MG often have other AIs. And they can pop up at any time. That's why tracking new symptoms is so important.

If you are doing worse, you need to go in. This is silly doctoring—and dangerous. Since you are quite active, your MG is not having the rest it needs. Something has to give. Either you have more treatments or back off on activities. A BiPap or CPap won't help avoid a crisis.

When does your doctor return?

You may need a trip to a primary doctor to assess some basics. When was the last time you went in?

I hope you will get all of the figured out so that you can have a somewhat normal and stable life.


Annie