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Have your appearance or physical features changed since MG?
For many of us living with Myasthenia gravis, visible changes like eyelid drooping, weight changes from medications, changes in facial expressions, and scars from surgeries can be emotionally challenging and troublesome to accept.
Have you noticed changes in your appearance since your MG diagnosis or treatment started?
How has it impacted your self-image and confidence?
Have you found any ways to cope with these changes or feel more like yourself again?
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11 Replies
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Smile has definitely changed…left eye lie droops.
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My eyes used to be vibrant, now they look tired. My spine shrank 1 1/2in from cortisone but it’s not obvious.
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What do you use Cortisone for and does it work?
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I took high dose prednisone at the ICU a year ago and it was helpful for MG symptoms especially double vision which is so hard to cure. But as I lowered Prednisone, double is coming back and I don’t want to ruin my spine. Looking for a remedy.
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Eyelid drooping and problems regarding facial expressions were the first visible changes in my appearance. It was tough when friends and family members obviously had to fight their tears while looking at me. While these changes could managed fairly well through medication, it was the enormous weight gain and a distinct moon face resulting from prednisone medication that really devastated me. Especially in combination with amyotrophia and the loss of strenght.
First step was to be patient and to accept these changes for the time being. Next steps were to reduce medication in accordance with medical advice, to change nutrition and to intensify physical exercise.
After two years of MG in terms of weight I am back on the pre-MG level. I am still misssing strength and muscles to move confidently, but even being dependent on a rollator walker I feel a lot more self confident. It´s still a long way to go and patience will remain to be key…
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One eyed droopiness and double vision both often made me self conscious of my professional presentation. Chewing and swallowing issues are easier to hide, although I find my standing posture awkward.
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YES! Lost ALLmuscle strength, energy and 70lbs in 18 months!!! AND Brain fog!
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Prednisone made my face full and moon neck. During my worst times couldn’t smile and felt like a freak. Vyvgart along with cellcept has helped most of my facial issues but between prednisone and Vyvgart it’s so hard to keep weight down. And I was thin my entire life. Now 63. Definitely frustrating but I just keep saying to myself I’m doing really well and be thankful.
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I was always told I had a beautiful smile. So of course I lost that. My eyes are dull now and they used to be my favorite thing about myself as they’re blue-green. I’m still hopeful inside but when I look in the mirror I almost can’t believe what has happened to me
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Thanks to Prednisone, l now have a square looking face rather than oval. l just let people know l have a Legos face and l am all right with that.
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L eye lid droop always ; occasionally r slightly, round face from Prednisone, weight gain, neck “hump”( can’t think of correct term!)
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