Start a journal before mestinon,after a Dose several hrs later, symptoms at beginning of day vs end of day,photos if eyes are involved. Anything to document vs your Recall.keep it even if he stops mestinon to prove it works. If possible rest when able,use grocery cart, anything that saves energy. Good luck.

That is frustrating! You have my sympathy - many of us have been through challenges getting a diagnosis and treatment.

Good advice on keeping a journal and pictures. A couple of thoughts - even though my neuro was convinced I had MG, because I'm also seronegative, he tested for some other things that can mimic MG. (LEMS, paraneoplastic syndrome, etc - I don't remember everything). Because everything came back negative, and the mestinon and prednisone helped, he confirmed the MG diagnosis. I also was lucky in that before my labs came back, he ordered a chest CT (my symptoms had dramatically progressed right before I saw him - trouble chewing and swallowing, so he was confident getting the scan without antibody test results). I had a hyperplastic thymus, so that plus my symptoms, improvement on meds, and negative results for everything else further confirmed MG.

Second thought - can you ask if it's possible to stay on the meds while neuro tries to figure out what else might be going on? If they require a clean slate, ask for how long - with mestinon, it is so quick acting that you should be able to restart and get relief pretty much immediately after any kind of physical exam, testing, labs, etc. It stays in your system a very short period of time, so you should be able to continue taking it up until a day or two before whatever tests they want to do. If you have other doctors in that system who trust you and with whom you have a good relationship, see if they will advocate for you and request that you be able to continue the mestinon except for whatever period is needed for testing.

Good luck and keep us posted!

Oh one more thought - was it a regular EMG or a single fiber EMG? (The latter is what is typically used to diagnose myasthenia gravis). If you had a single fiber EMG that is positive / abnormal, then I am VERY confused as to why the new neuro has a problem with your diagnosis - again, unless they are just trying to make sure it's not something that mimics MG.

convinced *

Thank you... Good advice.... I am not sure if single fiber EMG.... I'll look into, Thank you both!

I'm in a similar state. A neuro in 2009 said not MG with minimal testing; another in 2013 said possible MG with a "Lazarus effect" of Mestinon - it gave me my life back in 3-4 hr windows. Then when LEMS and MuSK came back negative, she said it wasn't MG.

Next week I'm getting exercise and lung testing through a research respirologist when I'm off Mestinon for 2 days and then back on Mestinon two days later. The doc hopes that this will give some proof that is is MG, in spite of the neuros' decisions.

A rheumatologist once asked why I keep looking for a diagnosis. I told him I'll need to retire early on disability the way things are going and I'm going to need a diagnosis for that! Good luck in your journey. You are definitely not alone.
Flutebell

Remember that a second opinion is just that... an opinion. Negative AB testing is not uncommon. The main thing to remember is that often, diagnosing MG is often made my ruling out other conditions that present with some similar symptoms. Starting over may simply be that process. It's hard to be patient when you don't feel well and you want to feel better NOW. Learn all you can by reading the information posted on the MGFA and similar websites. Arming yourself with knowledge and talking frankly with your physicians is in your best interest. Remember that Mestinon alone may help improve your symptoms, by doesn't address the underlying autoimmune disease process. Before engaging in long-term therapy with immunomodulators, yo want to be certain you are treating the correct disease.

I have been in your shoes for quite some time, having MG symptoms for 10 years now and a diagnosis for 6 years, but being antibody negative in every test.

When the doctor says "starting over" I'm not sure that means they actually wipe out your official diagnosis. I think there might be more to it than just saying you have MG or not. There is government reporting to be done for diseases as well as insurance records and an official diagnosis is not to be treated lightly or dismissed casually.

The starting over may just be his term for starting all the testing over to rule out other autoimmune causes. I have been through many tests since my diagnosis but none of the doctors have dismissed my dx of MG. It remains on all of my records with all of my doctors. I have had to be hospitalized 9 times in the last 3 years for severe MG symptoms and taking cellcept, ivig, and plasmapheresis, without any problems from the insurance because of my official diagnosis even though it is still antibody negative.

Because of this, we need to consider the place a doctor is put in when it comes to just tossing about an official diagnosis. Their reputation and practice is on the line if they just casually give or take away a diagnosis on a whim. Over these years, I have come to feel sorry for my doctors who really care, because of the frustration I must cause them as I have not been one of their success stories.

Hope you do well and hope you find good doctors who understand the complications of this disease.

Do antibody tests ever change over time from negative to positive ? Just curious since so many patients are negative.

Xmas25, yes. Per my neurologist, you can "seroconvert", ie antibody tests can go from negative to positive. Don't know how common that is though.

If you are not using a neurologist that specializes in MG you are wasting your time.

So, You have typical MG symptoms, and Mestinon works to alleviate these symptoms, but Neuro #2 is not convinced you have MG... VERY STRANGE!!!!! .....Personally, I would have serious reservations about continuing with Neuro #2...

Thanks everyone, so my DR. said it's almost never that antibodies are negative and you have MG..... Which seems to be the opposite of what I have researched....?????

Take charge
Tell him you are doing fine and want to stay that way and you will contact him if something changes.
End of story

I agree with the journal it provides the Drs with something to listen with other than there ears. There are good symptom tracker apps which is what I am back to after something similar - tested positive and was started on Mestinon - and yes my life is better with the mestinon . Nuero A wanted to do IVIG as the Mestinon helped greatly but wasnt controlling all the symptoms. Enter Nuero B who I had to see if I wanted to to IVIG on the public system here is Oz. Basically didnt believe I was myasethenic ordered the blood test redone and because the test was positive but borderline - no MG or EMG test required. So now it is back to Neuro A and if we do the EMG maybe I will get the IVIG or maybe not ... so the thing is this if you know you are sick and something is off you have to keep going .