David- Im very sorry to hear of everything your going through, it all sucks, and that time period when you dont actually know what is going on with your body and oyu have doctors running all around you trying to figure it out, makes it even worse.

I am young too, 17 actually, and if you ever want to send me a message and talk, id be more than happy to talk about anything you wanted.

Yet, i completely agree, EMGs, SUCK! Infact I had one today to test my muscle junctions to see how bad they were.

I can only really help with the treatment and symptoms of this horrible disease. So here is goes.

Symptoms: at fist the most common is a droopy eyelid(ptosis) which usually occurs in one of the eyes yet sometimes it can affect both. Most of the time my right eyelid is halfway closed because i dont respond to one of the treatments called mestinon which is a fast acting drug that helps with the receptors.

Further on, people can experience problems such as limb weakness, which in me occured very quickly after noticing the eye, yet nothing really to worry about because its just a bum leg. Yet in some patients it can start affected the breathing, chewing and swallowing muscles. It makes it so that the muscles become so weak that they may possibly stop working, not to scare you. Yet Ive been in the hospital almost with tubes shoved down my throat so that I could breathe, yet they dont like doing that because if that happens then its hard to get your lungs off the intubator.

I know this is alot of information. Yet if you would, could you tell me what muscles you feel weak in? Do you have trouble standing up from sitting in a chair, or get dizzy when walking around?

Have you been hospitalized? Have you tried mestinon?

Also, for treatment, many patients, reluctantly take prednisone. Prednisone is widely used for alot of things, yet in this case its used as an immunosuppresent to suppress the antibodies which are causing the myasthenia symptoms.
There are tons of meds, including cellcept, imuran, etc.

IVIG/Plasmapheresis- These options are used usually when a patient is in crisis, for rapid improvement. It basically takes out alot of the bad antibodies causing your symptoms, though it only lasts about a month.

Thymectomy is always an option, if you do test + for MG, your doctor will most likely talk to you about this. I had it. I had a tumor on my thymus gland which is most likely what caused my MG, and taking it out, can help. yet it was a long recovery process..



hope this information helps.