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?
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.
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.
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
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
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.