Hi, and welcome! The doctor might seem weird to you, but I understand why he was excited. It's because MG is hard to diagnose when the antibodies test comes back negative. Your response to the tensilon test was a beautiful thing for him to see, because it was so clear.

Here's some good news: there is a drug you can take that acts like tensilon. It's called Mestinon (generic: pyridostigmine). It's probably going to help you a lot! I'm sure you'll come out of your neuro appointment with a prescription for it. It may do wonders for you. Work with your neuro to find the right dose (too much is as bad as too little), and there's also a time-release version if you need it.

Mestinon is just for treating symptoms. It works four about four hours at a time. You will also be given a long-term treatment that's designed to put you into remission. One possibility is drugs to suppress your immune system, to stop it from attacking your neuromuscular junctions. There are a handful of choices here--some act slowly but have fewer side effects, and some act quickly but are more trouble. You may also be a candidate for having your thymus removed. Don't forget to ask him about your thymus!

Re: ephedrine: that's an old treatment for myasthenia gravis. I'm not sure if anyone knows why it works, but it seems to, for some people at least.

Yep, your voice loss is caused by the MG, definitely. All the symptoms you describe sound typical of MG to me. Please, please be careful not to fall, especially on the stairs.

One more thing: MG can tank really fast. If you have trouble breathing, or start to choke, or are falling frequently, don't fool around. These are danger signs. Go to the ER. There are treatments for MG that work really well and really fast: one is IV infusions of immunoglobulin (IVIG), and the other is plasmapheresis (sort of like dialysis). These are reserved for people who need to get past a crisis, because they're expensive and cumbersome. I mention them so you'll know that if you have a crisis, treatment is available. Don't take chances!

Feel free to ask any questions as they come up! I'm so sorry you have MG, but how good to be diagnosed. You're sero-negative (that means the blood tests didn't find the antibodies) and that often (guess how I know...) leads to a long, long road of going doctor to doctor, wondering if it's all in your head, having doctors suggest the problem is emotional...so, here's hoping that now you know what's wrong, that the treatments are a whopping success.

Abby