I'm a little worn out right now, but I need to say a few things.

Some MGers don't do well on Zithromax or Biaxin. I do just fine on both. Biaxin is an amazing antibiotic for sinus or lung infections. It can leave a bit of a strange taste in the mouth, but totally tolerable. I usually use the liquid form of Biaxin because it absorbs better.

You might also check with an allergist for any undiagnosed allergies. I don't have sinus infections anymore due to taking certain foods out of my diet (and knowing that I don't have stomach acid and taking Betaine HCL with food). I also have a IgG sublclass 3 deficiency (variable). Or find a good immunologist, which might be equally as helpful. The hives could be from the immunodeficiency and IVIG might help you.

Did they do IgA or any of the other immunoglobulins? Have you been tested for celiac disease?

Did you know that deficiencies in the IgG subclasses can affect the antibody level in MG? Meaning that it can decrease it? It doesn't decrease the amount of antibodies in the body, only makes it LOOK as though it's less than it is on a blood test.

Do your "brilliant" doctors know that?!!

How do you know that you don't have ptosis? My ptosis was missed by me and everyone else for 41 years! You really have to see a neuro-ophthalmologist in order to know for sure. You might think your eyelids are normal or, rather, your normal. Unless you take a photo when you're rested and one when you're worse, how can you know for sure? It's the relative change that's important.

A clinical exam where you do a few resistance movements against a doctor's hands is not a true test of MG. It's only when an MGer is really bad that a clinical exam is telling. MG is all about weakness after repetitive (meaning more than a few movements) or sustained activity. Some neurologists still don't understand this simple fact about MG! As I've said before, they should put us in a sauna and then watch us try to walk up a flight of stairs, and then examine us!

Yeah, when you take Pred and your immune system is already "deficient," you will feel worse in general. That's a positive sign that it made your muscles feel stronger. Pred would probably not be a good drug for you, given your deficiencies, infection history, etc.

These guys at Duke tend to be super arrogant, especially with women. I'm surprised that you didn't try to go to UNC at Chapel Hill. Dr. Howard can be a bit hesitant with a diagnosis, too, but he has a LOT of experience and is an MG expert.

I'm truly disgusted with the lack of attention paid to detail here. And leaving you with "You don't have this, therefore you're fine" BS is simply bad doctoring.

Time to check in with your primary doctor and discuss all of this!


Annie