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One movement specialist said no to MG diagnosis because of negative EMG results including on the “gold standard” EMG, plus lack of really high antibodies. His colleague thought I might have an early case that wasn’t showing up on EMG yet and should do a trial of Mestinon. Has anyone had such a trial in an iffy situation like this?

November 21, 2025
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A MGteam Member

My husband has been diagnosed with MG 10 weeks ago. Positive AchR antibodies. Musk negative. His symptoms were droopy eyelids, and started with double vision. His EMG was negative. His CT Chest was normal with no signs of a thymoma, though I’ve read that sometimes they don’t see this clearly enough until surgery. CT scans are unable to show lesions less than 3mm because of the slices of imaging they take. However, he is responding to pyridostigmine. He is also taking prednisolone which they will switch to mycophenolate after slowly reducing his steroids to avoid long term side effects. He is being treated at Addenbrookes, Cambridge, UK. They have found a lesion on his liver (an incidental finding), so he has an MRI booked.

November 21, 2025 (edited)
A MGteam Member

Hi Peggy. I've had extreme fatigue for the last few years now. I could feel it coming on in my face when I knew it was starting, to the point that my face was very uncomfortable (weighted down feeling). This happened everyday at the same time. If I didn't listen to my body and take a 1-2 hour nap it affected other parts of my body. Example, if I pushed through and didn't take my nap when my body said I was done I may drop something I'm holding and stumble because I lost my balance. I think I got lucky with the Mestinon. My Neurologist warned me a common side effect is diarrhea. I experienced strong nausea but started eating when I took my meds and I think my body got used to it. I now take 1 in the morning and 1 at 11:00 in the morning. I'm just starting to learn about MG but I certainly am familiar with my own personal experience. And happy to hear if you have any other questions.

January 15
MGteam

How many symptoms do you need for an MG diagnosis when test results are mixed?

There's no set number of symptoms required for an MG diagnosis. Doctors consider the complete picture: symptoms, antibody tests, EMG results, and sometimes response to treatment.

Your situation isn't unusual. A MGteam member shared: "None of my Show Full Answer

How many symptoms do you need for an MG diagnosis when test results are mixed?

There's no set number of symptoms required for an MG diagnosis. Doctors consider the complete picture: symptoms, antibody tests, EMG results, and sometimes response to treatment.

Your situation isn't unusual. A MGteam member shared: "None of my bloodwork was positive, but I was diagnosed on the basis of symptoms, nerve conduction studies, and response to pyridostigmine (Mestinon)."

Having high antibodies with negative EMGs can happen. EMG tests can sometimes miss mild cases of MG, which is why doctors may consider other factors. The fact that one neurologist suggested a Mestinon trial makes sense—response to treatment can actually help confirm diagnosis when other tests are inconclusive.

Some people do have early MG that doesn't show up on EMG yet. Testing sensitivity varies, and symptoms can be present before nerve conduction studies detect changes.

It's worth noting that diagnosis can take time. One MGteam member said: "It took me three years to get diagnosed. Patience is the word." Another shared: "My diagnosis was not confirmed until I had an EMG... It took the EMG."

A medication trial could provide valuable information about whether your symptoms respond to MG treatment, which would help guide your doctors toward the right diagnosis.

November 21, 2025
A MGteam Member

Actually, I did want to ask you a few more questions, Abigail.
What were the symptoms that brought you to the neurologist in the first place?
And have you had any side effects from the Mestinon?
Thanks

January 14
A MGteam Member

Thanks for your reply, it's so helpful to hear the experiences of other people. I'm on vacation so, no I haven't started the mestinon. But I think I will when I return home. Then I can write in with my results.
Thanks again.

January 14

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