Hi Mandy,

There are a few things that I wanted to say that I hope could be helpful. First of all, I am sorry to hear that you are going through all of this. I have been in the hospital 30 days in the last year and it has been hell so I really do understand.

So, you only had 5 days of medication treatment for all of this? If, for example, you do have MS and MG and you received steroids-- that could be helpful for the MS but could make it difficult for the MG because they are relatively contraindicated and some people have a harder time than others on them. Did you have a paradoxical effect with any symptoms?

Yes! You can have extreme leg weakness in MG. I have it when I am doing poorly and during ivig and during exacerbations. I cannot even lift my legs off the couch at all when it is bad. In the hospital, I could not even stand. I would just collapse. The collapse went on for a week but before I was on the right treatment for my MG (ivig), I needed a walker to walk for over a month after a 9 day hospitalization and then I went into crisis again. Then I got 5 days of ivig for the first time and I walked unassisted again a few days later for the first time in 5 weeks. It was amazing!

Not sure why they didn't try ivig since it is used for both MG and MS and they are they most likely scenario right now for you it sounds like. You may want to ask or suggest it to the next doc. I mean you have aChR antibodies and that is pretty much a clear diagnosis for MG from what I understand--not that I am a doctor.

What are your other symptoms you haven't mentioned? Maybe that would help us understand more.

What state do you live in? An academic hospital might be a good place to try.

debra