Originally Posted by Stellatum

Hi, and welcome. We understand how scary this is, to have a new diagnosis with a rare disease--especially after having weird symptoms. It's wonderful that you have a diagnosis. It sounds like you're in good hands. I'm glad your doctor is checking your thymus and talking about Mestinon and the possibility of surgery. I have read that higher numbers don't necessarily mean a more severe case of MG in any specific patient.

There's a few things you should know. First, myasthenia can (but doesn't necessarily!) get worse fast. If you're having extreme weakness, or serious trouble breathing, or you find you can't swallow, or if some new symptom pops up that alarms you, don't hesitate: go to the ER or call an ambulance. It's nothing to fool around with, especially if it involves your breathing muscles. You need to get to a hospital.

There are "rescue" treatments for myasthenia that work really well (for instance, they can clean the antibodies out of your blood with plasmapheresis, which is similar to dialysis. They can also shut down the production of the antibodies that are causing the trouble by infusing you will pooled antibodies from donor blood. This is called IVIg. Some of us on this list have it regularly).

Those are emergency treatments. Mestinon is for treating symptoms daily. If you start Mestinon, ask for tips here! Another thing your doctors should consider are long-term drugs to slowly suppress your over-active immune system. There are a bunch of different choices here. The hope is that these drugs will eventually put you into remission, or at least reduce the severity of the symptoms.

Please feel free to ask your questions here! We all understand what you're going through--how scary it is, and how alone you can feel with a weird disease no one's heard of, especially if the symptoms come and go. By the way, I have no eye symptoms, either. It's hard to say what's "typical" with MG.

One more suggestion: it's very helpful to keep a journal. Write down what you did each day, what you ate, what the weather was like, if anything stressed or upset you, how you slept, your hormonal cycle if you're a younger woman--everything you can think of. And write down your symptoms. You'll be surprised looking back what correlations you find. Many of us have "triggers" that make things worse, and at least to some extent we can learn to avoid them. You'll feel better emotionally when you get to know the disease and its effect on you at least somewhat. It's the constant surprises and facing the unknown that's so unsettling. Hang in there--and talk to us! There's nothing that would make us happier than to be able to help.

Abby