3 Tips You Wish You Had When You Were First Diagnosed With Myasthenia Gravis?

What a wonderful topic, Jodi. Mine are:

1) Have a talk with yourself. Admit that you have MG and your life is going to be different than you planned. You will have to give up some dreams, but you can make new dreams, smaller dreams, and live a happy and fulfilling life.

2) Be patient. Everything about MG takes a lot of time, from diagnosis to treatment to symptom relief. It's not a sprint. It's a long, long grind. Control your expectations and settle in for the trip.

3) Be your own biggest cheerleader. You are and always will be the same person you were. Don't look at yourself through the eyes of others. Set your own goals and celebrate your own achievements. Understand that you are responsible for your own happiness. Nobody else.

My opthamologist diagnosed my MG, did a cat scan on my thymus gland found nothing, but discovered a gist tumor on the tail of my pancreas. So had to get treatment for both. He said the only thing he could prescribe was pyridostigmine, which did no good at all except screw up my ability to Pee, had to wear pads as I had no control over my bladder, still trying to get that under control although been off it for 6 months. The doc said it was a side effect.

I think that it is top of the list important for you to be able to talk with your Dr. If something happens. I was giving mestanon and told to take it every 6 hours. After 3 hours I couldn't get water down. We tried to get through to the doctor but the office was terrible. The girl on the phone would say that the doctor doesn't think that as long as things are any worse just keep doing what we are doing. What part of can't swallow don't you understand? She even said maybe I should stop taking it. This is from a office person. I am so glad to have those early days done and all of you as a support group. Thank you @

I was diagnosed with MG after a long period of tests, even including a speech therapist because I was slurring my words. My primary care doctor sent me to a neurologist after my daughter made a presumptive diagnosis after online research. The neurologist told me that a simple blood test would tell whether I have MG, and the blood test came back positive. However, neither my doctor nor the neurologist ever told me anything about the disease - what to expect, how to cope, etc. It's a good thing I have access to the internet, as that has been my education! And I am still learning. It is extremely helpful to read what others are experiencing and what they are doing to cope with the disease. I am fortunate that I was 'up in years' before I started having swallowing and speech issues, and I am fortunate that my symptoms are controlled fairly well with pyridostigmine. However, I'm sure it would have been helpful when I was first diagnosed if my primary care doctor or neurologist had done more than just say "You have MG."