Hello BlueDogg. I'm so sorry you guys are having to go through this. I've been there. I have MG, diagnosed Halloween of this year. Both the AChR and MusK came back negative. I had an EMG and it too was normal. I'll back up and share how I came to be diagnosed. At 26, gave birth to my youngest daughter. Something seemed terribly wrong; doctors said she had severe low muscle tone. She couldn't nurse, couldn't suck a bottle for more than a few seconds. She would choke. Her oxygen levels would drop to 85...All tests for suspicious causes, normal. Soon, I'm so weak. Thought I had the flu?? Doctors suspected Multiple Sclerosis. Neurologist found nothing. Given meds for my muscle (pain) - it was a severe burning; as if I had just had a brutal workout. Drugs (for nerve pain) only made me groggy and 'dumb'. I stopped taking them. My baby girl held her head up for the first time at 4 months old - what a joyous day this was for me! I still remember where I was, what I was doing...I was so happy! Lots of therapy for the first year (physical, occupational, speech), geneticist, neurologist...no answers for her early condition. I too, somehow, just got better. I eventually join a gym because I want to get back into shape. My muscles tremble even with no resistance on machines. Trainer says, "you're really out of shape". I work hard. Second day, I collapse there. I didn't pass out, just collapsed. Short lived. Weird. I was clear headed! They ask me not to come back until I have a note from doctor saying I am safe to workout. I get checked...nothing. No abnormalities in tests. "Oh well" is my attitude. Just move on, I thought; and so I did. Fast forward 10 years or so to summer 2013. I'm refinishing my dining room table in my carport. Soon, I'm hurting so badly. My leg and arm muscles are terribly sore; that brutal burning again. I quit the project for the day. I have to lay down. Four days later... I can't make it down the steps. Rest, rest, rest. What's wrong with me, ugh!!! Weeks later... on my computer most of the day (I work for myself). My eyes...the double vision and tears! Eye doctor gives me eye drops for severe dry eyes. I get my first pair of bi-focals (I'm officially old). The heat puts me down; I am so weak! Years of this...only abnormal tests are elevated antibodies, inflammation markers. I am told by my general practitioner I likely have an autoimmune disease, but tests are not pointing to anything specific. They refer me to a Rheumatologist. I'm given an appointment for 1 year away! "Forget it", I thought. Summer comes again...I get weaker and weaker with physical activity. I'm drinking lots of caffeine to try to keep me going through the day. Chest discomfort. Abnormal EKG. Normal stress test, normal holter monitor. Chest discomfort continues. CT of the chest to check for plaque in my arteries...An abnormality is found: An enlarged thymus gland. My doctor wants me to have a test done; orders MG test (AChR antibody). Negative. I inquire about what MG is, and find its symptoms oh so familiar. I insist on referral to specialist regardless of normal lab result. After thorough examination and review of medical history and tests, I was diagnosed by my neurologist. He put me on meds and THAT DAY, after taking my first dose, I felt normal again. My right eye, it looked normal again! No more crooked smile, no more droopy eye, no more weakness!! He ordered more tests; the MusK, the EMG; both normal (as mentioned in the beginning). I questioned the diagnosis and shared so with him. He patiently educated me and assured me I have MG. My daughter? She likely had neonatal Myasthenia he said. She is a happy and normal teenager today :) All this to say, the tests alone are not diagnostic. Do not be afraid to seek out a neurologist who specializes in MG. I know the frustration...hang in there. Do see a neurologist who specializes in MG. Best of wishes.

Leedy, thanks for the response. I have read so much about MG and how hard it is to get a diagnosis it is ridiculous. My wife too, was given mestinon in the hospital and within 24 hours she was walking so much better and talking much better too. She was able to eat and drink without everything getting stuck. The neurologist has told her to stop taking the mestinon because the tests show she is normal. I can already see a difference. I don't think that there was chest xray to check her thymus gland. I will see if it has been done and if not make a suggestion. She has only been dealing with this for a few months but it has taken a toll on her quickly. I will see about the chest x-ray. Thanks again for your input.

I don't know that an x-ray will show it, a CT of the chest will.

Time to find a different neurologist, one who looks at the patients, symptoms and response to treatment.
Many of us with MG, have negative test results, although different antibodies are slowly being discovered.

Hi blue dog , try not to get too discouraged . I also have been diagnosed with mg and all my test were negative. Emg , blood work, ct scans, Mri all negative but my neuro believes this is what I have. I take 120 mg of mestinon 4 times a day and have improved a lot . I had double vision droopy eye slurred speech swallowing problems sore jaw sore neck. Change neuro to find one that will listen to you and not only the test results. Good luck

HI. Look for a Nero that specializes in MG. You can find a list in myasthenia.org. You may hv to drive but two thing. See if they will look at your records before you get there and any test that they may need befor le you would get there. Sometimes they will do it

Hi Blue Dog - I have to agree with these other folks. All my tests were normal as well. It took my persistence with a local neurologist that something was wrong and I couldn't function for him to finally refer me to a higher or studying level neurologist. It still took a lot of tests and time but finally got the diagnosis 2 weeks ago after a year.

Hi Blue Dog,
Glad to know that your wife is better with Mestinon. Its OK to have Mestinon/Destinon. Yes they say it shows effect instantly but for me it take a little while. Having said that its almost a savior. I never step out of the house without it.
Please make sure she has some antiacid on a daily basis and a liver detox once a month (through food and nutrition).
And remember, if she is happy in her mind, calm in her head, then the chances of remission are far far more.
All the best.
http://miracleme.cpallavirao.com

Hi Blue Dog. I agree with the others. Please get your wife to a neurologist who understands MG. All of my initial testing was negative but I finally had an EMG which confirmed but this is not true for all. I would also suggest seeking out a local support group. It was so wonderful for me and my family to meet others dealing with the same issues and we have learned so much from others.

Thank you all so much for the responses. My wife is seeing a neurologist at Johns Hopkins that seems to be very good. They took her off the mestinon since all the results were negative. I have noticed a definite difference since she stopped taking the medicine. I think the doctor want to see how she does without it and then go from there. We go back next month so hopefully she does ok until then. I just hope they figure this out sooner than later.

Sorry things are going so slowly in finding out the problems.
If she keeps getting worse, don't delay in notifying your doctor about this and getting help, as most of with MG have found out, it is at the beginning when we are most at risk for serious problems.

And on your own, do a little testing with mestinon. Most of us eventually are put on "as needed" dosing up to some limit (mine was 120 every 4 hours max but I took 60 every 2 hours sometimes and none other times).
On a bad day, she could take a mestinon pill to see if it made a clear difference. I found out that monthly visits to the specialist were not enough, so I tried things like no mestinon for half a day, maybe 1 and 1/2 pills instead of 1 just to see if I could tell the difference, and then reported what I found out at my visits -- actually figuring out how much I needed to get through the day as prednisone began to work and I didn't need mestinon then.
Good luck