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Mid-diagnosis journey and have a few questions

Hi there, having been referred to neurology earlier in the year with a drooping right eyelid, I am now in the midst of tests and scans; blood tests came back antibody negative, I am awaiting results of a chest MRI and I have been referred for an eye EMG at another hospital.

In the last two or three months I’ve been experiencing daily pain in my ankles, knees and hips, particularly when getting up off a chair and when going up and down stairs. I’ve also started to have some left eye ptosis as well. I take Mestinon when my eye symptoms occur and that pretty much reverses them temporarily.

I just wanted to ask whether these leg and hip pains might be an indicator of generalised MG, as my consultant didn’t seem to think that was too likely? I’ve also started to get quite wobbly at times when I walk, and bumping into things. For example, at work last week I got up from my chair, walked a couple of steps and fell sideways into a concrete pillar. I laughed it off at the time but it shook me up.

Any feedback appreciated, and any pointers on what I should perhaps ask my consultant at my next appointment would be great.

Thank you!

  1. Hi there, we are so glad you found our community. Please know you are not alone in experiencing these symptoms. I wanted to share any article that discusses the connection between pain and MG: https://myasthenia-gravis.com/clinical/pain I hope you find it helpful! Please keep us updated on your diagnosis journey. Wishing you a gentle day. - Kaitlyn (Team Member)

    1. I am so sorry you are going through this!! I too have daily pain in my ankles, knees and hips & shoulders. But for me it is due to the Osteoarthrosis that I have and made worse from the fatigue from the MG. Are you being tested for LEMS also which is a different form of MG. Similar symptoms & treatment.








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