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A MGteam Member asked a question 💭
Texas City, TX

I have bulbar symptoms and waiting for diagnosis. Problems swallowing, chewing (makes my jaws tired), facial weakness and speech problems. My doctor is locked between ALS and SeronegativeMG. Symptoms improve when rested and not stressed. I taken Mestinon 60 mg x 3 a day and also starting my 3rd round of monthly IVIg. I saw some positive results with more energy after the first IVIg about 2 weeks after infusion. However, I haven’t seen as much progress with the second round. I haven’t been told… read more

November 9, 2025 (edited)
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MGteam

Have you experienced misdiagnosis between ALS and myasthenia gravis?

Yes, distinguishing between ALS and myasthenia gravis can be challenging, even for doctors. The fact that your symptoms improve with rest and stress reduction is actually an encouraging sign that points more toward MG rather than ALS.

Here's what makes your Show Full Answer

Have you experienced misdiagnosis between ALS and myasthenia gravis?

Yes, distinguishing between ALS and myasthenia gravis can be challenging, even for doctors. The fact that your symptoms improve with rest and stress reduction is actually an encouraging sign that points more toward MG rather than ALS.

Here's what makes your situation lean toward MG:

- MG symptoms characteristically worsen with activity but improve with rest
- Your response to Mestinon and IVIg suggests your body is responding to MG treatments
- In ALS, weakness is progressive and doesn't improve with rest
- ALS typically doesn't respond to these types of treatments

Key differences your doctor is likely evaluating:

In MG, muscle weakness fluctuates and commonly starts with bulbar symptoms like yours - swallowing difficulties, chewing fatigue, facial weakness, and speech problems. The muscles don't waste away, and any loss is from fatigue rather than degeneration.

In ALS, weakness progresses steadily without improvement and causes muscle wasting over time. About seronegative MG:

Some people with MG don't test positive for the typical antibodies, making diagnosis trickier. Your doctor may need additional testing beyond standard blood work to confirm the diagnosis.

The fact that you're already on MG-specific treatments and starting your third round of IVIg suggests your medical team is leaning toward MG. How you respond to these treatments will provide valuable information for your final diagnosis.

Stay patient with the diagnostic process - it can take time, but working closely with your healthcare team will help ensure you get the right answer.

November 9, 2025

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