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Old 10-08-2010, 09:52 AM #1
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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Well, I'm glad I can help. When I needed help back in 2000, a site like this helped me. I'll never forget what that felt like, to have a place to go to where people "got" it.

Double vision isn't fun but the worst part about MG is having generalized weakness that gets worse or swallowing or breathing that does. Avoiding an MG crisis is a big goal for anyone with MG.

I won't bore you with details but I had MG my entire life but simply passed my physical inadequacies off as my "normal." It wasn't until my B12 deficiency in 1997 - 99 that my MG symptoms got markedly worse. I didn't figure out until March 2000 that I had ptosis. Now that's denial. Going almost 40 years not knowing you have a disease. I was misdiagnosed at age 10 with lazy eye, when it was really MG.

Don't worry, your sister will get VERY good help from Dr. Sanders. And, yes, they will WANT to do testing on your other family members. But will they want to do the testing!

Annie
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Old 10-08-2010, 10:45 AM #2
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pingpongman pingpongman is offline
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pingpongman pingpongman is offline
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ANNIE can I ask you a favor? I would like to scan my blood work to you via private message and see if you can give me the breakdown. My neuro-muscular doctor was reluctant to do that and my GP wouldn't touch it with a 10-foot pole. None of my doctors know my sister has it. I'm curious to what they will say now.
Thanks Again
Mike

Quote:
Originally Posted by AnnieB3 View Post
Well, I'm glad I can help. When I needed help back in 2000, a site like this helped me. I'll never forget what that felt like, to have a place to go to where people "got" it.

Double vision isn't fun but the worst part about MG is having generalized weakness that gets worse or swallowing or breathing that does. Avoiding an MG crisis is a big goal for anyone with MG.

I won't bore you with details but I had MG my entire life but simply passed my physical inadequacies off as my "normal." It wasn't until my B12 deficiency in 1997 - 99 that my MG symptoms got markedly worse. I didn't figure out until March 2000 that I had ptosis. Now that's denial. Going almost 40 years not knowing you have a disease. I was misdiagnosed at age 10 with lazy eye, when it was really MG.

Don't worry, your sister will get VERY good help from Dr. Sanders. And, yes, they will WANT to do testing on your other family members. But will they want to do the testing!

Annie
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Old 10-08-2010, 02:54 PM #3
AnnieB3 AnnieB3 is offline
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Okay, that's odd. You had s-loads of blood work done and those two doctors won't discuss the results with you? Is it because the "Goliath" Mayo ran the tests? Who ordered the tests?

When doctors won't discuss something, you have to wonder why. Why wouldn't they help you figure it all out? Isn't that their JOB?!

I'm not sure what help I can be, since I'm not a doctor, but I can at least identify what the tests mean. As Alice would probably tell you, test results need to be taken together with the clinical picture to determine what they mean. Maybe some pointed questions to your doctors would help them to answer you. How frustrating.
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