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But since being off pyridostigmine (test requirement) I have started to decline...plus the stimulation of my eye area has left me with eye weakness and a facial drooping feeling...as if heading into a flare.

May 28
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A MGteam Member

When I had my single fiber test I had the same issues being off the medicine. Don’t know results yet but the test was really tough for me and stopped being able to take air in and the dr didn’t seem concerned. Also troubled that my regular MG dr didn’t seem to think it was a big deal either - just go to the er if concerned. Getting back in the meds has started to help.

June 1
A MGteam Member

Thank you so very much! This has been a 3 year process and since starting pyridostigmine in January 26, I have improved so much. I am fearful of losing something that has literally given me my independence back...it has been the difference between night and day...I will contact my neurologist tomorrow and let him know of my status. He did give me the okay to restart my medication before this test, come off of it for the test, then start it back up. After your response, I am heading to bed as I believe I can sleep now. Thanks so very much!

May 28
MGteam

That sounds like a really frustrating and exhausting day — traveling for testing, stopping your medication, and then feeling worse afterward is a lot to deal with all at once.

Normal EMG and single fiber EMG results don't automatically rule out myasthenia gravis. These tests aren't perfect, and false negatives can happen Show Full Answer

That sounds like a really frustrating and exhausting day — traveling for testing, stopping your medication, and then feeling worse afterward is a lot to deal with all at once.

Normal EMG and single fiber EMG results don't automatically rule out myasthenia gravis. These tests aren't perfect, and false negatives can happen, especially depending on which muscles were tested and how active the disease is at the time of testing. The fact that you've declined since stopping pyridostigmine is actually meaningful clinical information your neurologist needs to hear. That kind of response to stopping medication can support an MG diagnosis even when tests come back normal.

The eye weakness and facial drooping you're feeling after the stimulation during testing is also worth reporting right away. Eye and facial muscles are particularly vulnerable in MG and can fatigue more easily than other muscles.

Here are some steps worth considering:

- Contact your neurologist as soon as possible to report your current symptoms
- Ask about resuming pyridostigmine given your decline
- Make sure your doctor knows the eye stimulation during testing seems to have triggered increased weakness
- Ask whether additional testing or a clinical evaluation of your response to pyridostigmine could support the diagnostic picture

May 28

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