Hi, and welcome. Your story makes me so sad, because it's so familiar. It's devastating to be sick and not be taken seriously. I'm so glad you did finally get a diagnosis. I was holding my breath when you got to the bloodwork part--some people who have myasthenia test negative, and then either they find a doctor who really knows what he's doing (that's my story) or they end up in diagnostic limbo. We have some people in that place on the list. The absolute worst thing, in my book, is being told that it's all in your head. I lived with that fear for about a year before I got diagnosed.

Here's something you need to know about myasthenia (since it's clear that your doctors aren't great about telling you what to expect...): it can tank really fast and unexpectedly. If your symptoms suddenly get much worse, or you're really weak, or you have new symptoms, or you have trouble breathing or swallowing...these things are medical emergencies. You need to get to the ER or call an ambulance.

There are treatments for MG besides Mestinon and Prednisone. Mestinon, as you know, is a short-term drug that just treats symptoms. You should ask your doctor about the possibility of taking doses closer together. Mestinon has a really short half-life, which means it goes out of your system fast. But be careful--too much Mestinon can make symptoms worse.

Prednisone works by suppressing your immune system, so that it will stop attacking your neuromuscular junctions. There are other drugs that suppress your immune system. They work more slowly than Prednisone, but they don't have those awful side effects. Ask your doctor about Imuran (azathioprine) or Cellcept. These drugs sometimes put MGers into remission, or at least lessen the symptoms. I've been taking Imuran for a year. Bad news: I'm not better. Good news: I'm not worse. Other good news: zero side effects.

There is also something called IVIg (IV Immuno-globulin). This is done by infusion, with an IV. It's done in emergencies, if someone is having a myasthenic crisis, or for people with severe symptoms. Some people on this list have IVIg every six weeks for several days. IVIg is a blood product. It's the pooled antibodies of many donors. I think the way it works is that your body sees it has all those antibodies, it takes a break from making its own for a while.

There's one more treatment: plasmapheresis. This is sort of like dialysis. It removes antibodies from your blood. It's usually done in emergencies, but in some severe cases, it's done every six weeks or so.

Your neurologist should be willing to consider other treatments for you. If he's not, ask him to refer you to another neuro for a second opinion.

Welcome to the list, and please feel free to ask questions here. If you start a new treatment, let us know and we can tell you what to expect, what to watch for, etc.

Abby