It's frustrating when you have to wait so long for an appointment, like your EMG; my trick in these situations is to just call every day to see if someone's cancelled an earlier appointment and see if you can't just keep moving it up.

For me, it was an easy diagnosis because my AChR test came back positive and I have ocular symptoms that were "classic" as the report said.

I think it was helped along a bit by the fact that the first doctor I saw about it was an opthamologist. For them, it's a rare condition, but one that I think is different than most of the others they look at, so they might take it more seriously. When I went to go get checked out, he did say that he didn't think I had myasthenia gravis, but wanted to check and ordered the AChR test, like he took it as a serious possibility even if he didn't think that was it.

Hi unsure. Like copper, it was an ophthalmologist who suggested I be tested for MG (sudden onset double vision and ptosis) and again like copper, I tested positive for antibodies, so diagnosis was never in doubt. Good luck!

I think it is a time and knowledge pressure complicated by a percentage mentality. When a prestigious place like Mayo says 90% have positive tests and by the time they add MUSK and later converters, almost everyone is positive and our symptoms vary--neurologists just say "no" if the tests are negative. Not all, but a majority do not repeatedly test your muscle strength until weak and compare one set with another. The history and exam should be everything and they often count for nothing. My EMG was reportedly normal. I was diagnosed by history and one abnormal jitter on my SFEMG that the first neuromuscular specialist used to say only "probably MG," although he had treated my father for MG. The second said "confirmation of history--MG." Also I think there is some discordance between MG and the personality of those who chose neurology as a speciality viewing it as a cut and dried puzzle to solve.

In the hospital, there are protocols that do us no good since we do not have one and don't fit into their breathing one with their oximeters, and since they may not see another MG patient (to recognize) may consider it not worth their time to learn about it. We really have to be our own advocates.

This is not true for every doctor or every hospital anymore than saying all MG starts with the face and eyes. There is just a lot of misinformation out there and we are up against it. b.

I would ask them to run the MUSK MG testing.
You still may come back negative and have MG.
Sometimes, it's a clinical diagnosis. A repetitive nerve
stimulation and/or single fiber emg may help clinch the diagnosis
as well.
I hope you get answers soon!
Carly

Not nosey at all unsure. Good question.
At the time of my diagnosis I worked with nurses who were familiar with MG and directed me to see my PCP, who promptly Googled Myasthenia then sent me to a local neurologist.
At presentation my eyes could barely open and had difficulty holding my head up. He proclaimed "Oh my, you have Myasthenia gravis"
I tested positive in all 3 AChR, Binding, Blocking and Modulating. ( I cannot offer an explanation of what each mean; as far as I'm concerned positive is positive. )
I am fortunate to have had an immediate diagnosis.

Take care and keep enjoying what you love in life as best as MG will allow.
Larissa

My neuro wanted to "undiagnose" me before he saw the results of an SFEMG. Because I told him that the Dr. said that what I had was fibromyalgia.(which I do have). Thankfully, the Dr. that did the SFEMG found MG so he gave me a DX. I barely got the DX. He performed the SFEMG for 1 1/2 hours; ouch! If I had not prepared for the test like Rosie suggested, I probably would not have gotten it that day. My GP was pushing my neuro to give me a clear DX for MG.

I was actually diagnosed by accident. Though I had many symptoms issues my PCP didn't have a clue what it was. He tested me for everything from Rheumatoid Arthritis to Polycystic Ovary syndrome. When I started a new job at a Neurology office he told me that I might want to consider seeing one of the doctors which I wasn't comfortable with at the time. Three months after I started though a new neurologist joined the practice. He specializes in neuromuscular diseases and more specifically MG. I overheard him giving information to a patient at checkout and something he said triggered me to start asking more questions. Before the end of the day he had done a full exam and taken a VERY detailed history of my symptoms. We did all of the titers which came back negative but he didn't care what the blood tests said. He was convinced that this was MG and told me right up front that the tests may come back negative but it wouldn't change is opinion or his treatment. He believes that statics regarding MG are probably wrong due to the number of misdiagnosed or under diagnosed MGers out there. I did have a positive rep stim EMG though it was a clinically difficult study.

The fact is that there are likely more types of MG than are actually known to science right now. That means that those who are given a clinical diagnosis of MG that can't be confirmed by an antibody test can still have MG. Even an EMG isn't entirely reliable. It depends so much on the experience of the doctor performing the test. His/her skills in performing, understanding and interpreting the results. We do many repeat EMG tests on patients. In most part because the tests were not thorough enough or were "inconclusive" when previously done. We have never failed to find a diagnosis when repeating a test. We had one of those case on Thursday that went from a diagnosis of one thing to a completely different diagnosis. It was not an MG case but that just goes to show you that not everyone performing these tests knows what they are doing.

I hope that you find the answers that you are looking for. Don't give up. We are all here for you whenever you need a friend.

Angie

The "classic" MG case is a bit misleading too because there are so many variables in the presentation of MG symptoms. There is truly nothing that is an absolute with MG.

If you have already been diagnosed with MG I wouldn't let anyone "take it away" as you say without showing you why it cannot possibly be MG.