Clare,

No, CNS lupus does NOT mimic MG. Why? As I said in the other post, MG muscle weakness is fatigable and gets better with rest, Mestinon, and Tensilon. CNS lupus does not get better with rest or those drugs.

That's why an MG expert is so important. I wish you could find a good one in the UK who isn't a jerk (some of them are super horrid).

Even if you're seronegative, you can still have MG! Have you tried taking more photos of your face (before and after photos)? Do it in the same place, with the same lighting, and the same face/head angle.

Can you see a neuro-ophthalmologist?

I was seronegative at first and then had MG antibodies later. It can fluctuate over time, just as lupus antibodies do.

Is there anyone who can do a Tensilon test? If you have obvious ptosis, they can easily see if you respond to it. Some people have before and after breathing tests to see if it improves. Tensilon only lasts about five minutes, though, so any sign of MG has to be obvious and quickly testable.

How does your rheumatologist feel about doing a trial of Mestinon? Maybe start off with 15 or 30 mg. to see if it helps you. Ask her about it. If you don't have MG, you won't get better!

Keep working that UK system and get some help.

Annie