Welcome, Candi.

It sounds as though you've been through the ringer.

First, did they test you for the TPMT mutation BEFORE they put you on Imuran?

http://emedicine.medscape.com/article/1829596-overview
https://labtestsonline.org/understan...tpmt/tab/test/

It is extremely important that you figure out if this is MG or LEMS! People with LEMS are often at risk for small cell lung cancer. It's treatable if caught early.

And treatment for LEMS varies from that of MG.

Why doubt a test, simple because of the lab that ran it? Do you have copies of all of your test results? If not, get them.

What eye drops did you have for the pink eye? Some antibiotics can make MG worse, as can other drugs!

Do your docs just like throwing drugs at you? Amitriptyline is not necessarily a first line drug for headaches. Did they attempt to determine what was causing your headaches?!

Did you know that Amitriptyline inhibits the release of acetylcholine?!!!

http://www.ncbi.nlm.nih.gov/pubmed/6498615

Time to educate your doctors! You could potentially go into a MG crisis just due to this drug!!! Call the prescribing physician immediately.

You need to be extra careful with adding any new drugs when you have MG or LEMS. That means doing some research for interactions with MG drugs and possible adverse reactions due to MG. A conversation with a pharmacist is helpful, too. And tell all of your doctors that there is a list of drugs MG patients should not have (i.e., Ketek and Quinolones), and ones that might make MG worse.

Also, get your vitamin B12 and D checked right away. Many people have those deficiencies. A lack of B12 could be the cause of leg twitches, OR an electrolyte imbalance.

Make sure that your doctors THINK before they DO! You don't want to end up being a medical mistake.

There is so much to learn about MG and LEMS. But you need to find out which one you have first. Mayo has been known to hospitalize patients during a drug withdrawal to make sure that they don't go into a crisis while doing that.

What else do you need help with? Don't hesitate to dial 911 if you're getting worse (which it sounds as though you are), okay? Don't drive yourself in, because MGers can go downhill fast when they're getting worse. It's a very unpredictable thing. You shouldn't push MG when you're this bad. Just go in and get some help.

Take it easy, and keep asking questions—AND question your doctors.

Annie