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How old were you when you were diagnosed with MG?

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  1. I was diagnosed at 68 after about 18 months of testing and various diagnoses for other conditions. The first symptom was difficulty swallowing.

    1. Most of the 18 months was taken with testing for acid reflux. We did laryngoscopes, ph probe, manometry, barium swallow, CT scan, endoscope with biopsies, drugs, etc. There were no definite results other than severe esophageal motility disorder, which is more of a symptom than a condition. When I had a drooping eyelid it was diagnosed as Bell's Palsy. When Valacyclovir worked to correct the Bell's Palsy, a neurologist diagnosed that as a placebo effect. Finally, I couldn't hold my head up and I was given the MG blood tests. [Interestingly, I've had three different anti-viral therapies at this point that have been effective against MG symptoms. The first was zinc, Valtrex was the second, and the IVIG has been the third. But I haven't tested positive for any viral infections, and the medical folks will not consider a viral cause until I get something that clearly points to a specific viral agent].

    2. We appreciate your response, It can be such a challenge to diagnose MG. I'm glad you were able to confirm the diagnosis with the blood tests. That is really interesting that your symptoms responded to different antiviral treatments. Are you still pursuing any testing to determine if there is a viral agent? Best, Lauren ( Team)

  2. I was diagnosed at 27 years old, with my symptoms first starting with double vision and ptosis. Because I was also pregnant at the time, treatment was tricky. I have only found stability recently at 29.

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