Before the current tests for MG, diagnosis was primarily by symptoms and by response to mestinon and mestinon like meds -- tensilon, neostigmine... My own MG was first diagnosed by an eye specialist with an icepack to the eyes that relieved my ptosis.

As the antibody and emg tests have been developed they have become the first line testing. Since a controlled single dose mestinon test is actually quite safe and quite specific, one would think it would be an easy, quick test that could be done in the doctor's office with a nurse watching during an hour or so.

Good Luck

This was how my treatment evolved. Mestinon, prednisone, Imuran, IVIG. I am seronegative on all tests except with mild abnormalities on my SFEMG. Stay close to this group; there are a lot of caring people here. Good luck!

Yes, I had symptoms for years with no known cause. I am also seronegative. When they gave me Mestinon, I could feel an improvement. When they started, they gave me 30 mg 3 times a day. I could tell it wore off in about 2 hours. My neurologist then Mestinon to 60 mg. That was much better. Sometimes I need to take it 4 times a day; it depends on my symptoms.

That is how he made my diagnosis. Sometimes, I do not think I have any symptoms, so I do not take it. But, then the symptoms return. I now take Cellcept 500mg 2 times a day along with Mestinon. I would have felt better if I could have had a positive test but, I am sure this is what I have. It took me a while to except it, but the neuro says he is sure this what I have, and I know he is right.

Try to hang in there. Remember, if this is what you have, there are many good treatments .Lots of research, and more is known about this than most other neuromuscular problems. You will have good days, and so good days.
Good Luck!


I hope they give you a diagnosis soon. I think part of my stress was not knowing what was wrong with me.

I was given a tentative diagnosis in 2013 with a "Lazarus-like response" to Mestinon - not quite like rising from the dead but close! I was seronegative for AChR and negative on SFMEMG.

Then a year later the MuSK and LEMS results came back negative and I no longer had MG, said the neuro! Neuro said slurring words in the cold meant it wasn't MG. I'm now waiting to see a local second neuro for either reconfirmation that is is MG or maybe to rule out other neuromuscular or metabolic diseases.

But I like to tell this summer's story that fits MG to a tee! I was on holidays, took my 60mg mestinon dose at 8:30am. We packed up the car with bikes to drive to a nearby town with nice safe bike trails 45 minutes away. My hubby wanted to look at a bridge over a creek a 5 minute walk from the car. It was 11:00 am, warm (25C or 77F) but not excessively so. By two minutes my feet were dragging on the gravel and I had to hold his arm to keep from tripping and falling.

We made it back to the car, I took another 60mg and we drove to the start of the bike trails. At 11:30am I got on my bike and did 13 km (almost 10 miles) of gentle biking, with a couple of short water breaks and the addition of a cooling scarf half way.

So if that isn't a Mestinon-related response, nothing is! I'm telling my family doc this evidence for "it really is MG" on Tuesday so that he might be able to speed up the specialist consult.
Flutebell

I don't mean to hijack your thread but I am in the same situation. I have been to several neurologist and my blood test, emg's and sfemg have all been negative. However, without the Mestinon I can hardly even function. None of the neurologist will confirm an MG diagnosis and are unwilling to try any other treatments.

My weakness has progressed to the point I am basically couch bound and my main symptoms are as follows:

Overall Extreme generalized weakness and fatigue that gets worse with any activity. Ie eating a bowl of mashed potatoes is exhausting.

Walking /shuffling to thebathroom feels like I walked a block.

Difficulty walking, mainly use wheelchair or power chair to get around. Can shuffle around the house some approx 20' or so without rest

Limited movement mainly legs and arms

Lose my breathe w Little activity

Poor balance and coordination

Issues w Voice - lose or hoarse

Trouble swallowing, chewing and eating. I have been on a pured diet since approximately last November. swallow study shows issues

Bobble head, difficulty holding my head up, always resting against something to help stabilize.

Difficulty writing, typing and other types of fine motor movements.

I was disgnosed with Chiari approx 7 years ago and underwent brain surgery to help correct it. After 1 good year, I have been dealing with these symptoms ever since and they have progressively gotten worse. I have seen some very good Neurosurgeons and they don't seem to think I have any damage from my brain surgeries.

From all my research my symptoms seem to match MG very closely so i am just at a lost of what other diagnosis to even pursue or maybe I haven't found the right MG doctor yet. I have been dealing with these issues for the past 7 years and it is very difficult as I am sure some of you can relate to continue to live this way. Thanks for listening and if anyone has any advice I would very much appreciate it.