Help with info please
 

I tested positive with a blood test for MG but my CT scan came back normal. Is it possible I don't have MG? Thank you.

Hi, Tracie. A positive blood test for myasthenia gravis is considered conclusive. Myasthenia gravis means that you have antibodies that are attacking your neuromuscular junctions. The blood test found those antibodies, so you definitely have MG.

About 15% of people with myasthenia gravis have thymomas, which are tumors of the thymus gland (a gland in your chest). You had a CT-scan to make sure you don't have a thymoma. That's what the normal result means--no tumor. That's good news, but it doesn't mean you don't have MG.

Your doctor should now start you on treatment for your MG. He will probably give you Mestinon (pyridostigmine) which helps relieve the symptoms as you take it. He will also probably put you on a long-term drug to suppress your immune system, so that it will stop producing antibodies against your neuromuscular junctions. Sometimes people with MG also have operations to remove their thymus glands even if they don't have thymomas, but this treatment is still being studied--it isn't firmly established how helpful it is.

People whose symptoms are dangerous (like if they have trouble breathing or swallowing) or very severe can also get IVIG, which is a series of infusions by IV to suppress the antibodies that are causing the trouble; or plasmapheresis, which is sort of like dialysis (it cleans the antibodies out of your blood). These treatments work well, but they take a lot of time and are very expensive, and they only last a month or two, so they're usually reserved for severe cases.

Please feel free to ask more questions. Welcome to the board.

Abby

Thank you very much Abby, I was afraid of that. :)

I know, right? Here's hoping that your treatment works so well that MG recedes into the background! Remember, the people in this forum are mostly not the success stories. There are plenty of those--it's just that when MG ceases to be an issue, most people naturally stop posting. So don't get the wrong impression.

When I got diagnosed, I wrote to an old acquaintance who had been diagnosed with MG 25 years ago. I had lost touch with her. She said she was doing fine, but that she had to remind herself not to overdo it. In the 25 years since I'd known her, she had raised seven kids, homeschooling them all through high school, and she was currently in grad school, and also teaching college courses. This leaves me wondering what "overdoing it" means in her mind!

Abby