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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | |||
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I am also sero-negative. I have negative EMGs, but I have a positive SFEMG. I get my diagnosis given and taken away (LOL) randomnly. Now my mom is also getting diagnosed as well so maybe that will change things (not). Here eyes are her main symptom. She cannot even see anymore they are so wonky.
My eyes are ok - I *just* have proximal weakness. I am so weak though that if I am on the floor, I cannot get up. I have been seeing double since I was tired since I was a kid - so how can that be a symptom? Oh - I do not respond to mestinon - and my mom does not either!
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? Last edited by rumpled; 06-24-2009 at 08:14 AM. Reason: forgot mestinon! |
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"Thanks for this!" says: | rach73 (06-24-2009) |
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#12 | |||
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Hi Rach,
From what I've read in your posts, to me, you seem to be classic MG; especially considering your reaction to tensilon. There are many MG patients who are seronegative. They're even included as a percentage when docs. discuss MG! I'm pretty sure that there are antibodies that they haven't discovered yet, and these are responsible for a lot of the symptoms of MG. They can't rely so heavily on these blood tests for diagnosis. There are people who have antibodies to certain parts of their bodies, and never experience symptoms. For example, I have anti dsDNA antibodies-they're >200. Apparently, this is a marker for Lupus nephritis. I've had them for at least 5-years, and no nephritis yet *knocks on wood.* So there are so many other things involved in autoimmunity...Docs. are missing many pieces of the puzzle. Anyway, I hope you find a good doc. who will treat you. You deserve to feel better. They have to steer away from all these technicalities, and help a person when they are helpable! Last edited by Nicknerd; 06-24-2009 at 05:04 PM. Reason: poor grammer...lol |
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#13 | ||
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Rach,
I really can't understand the hold up on your dx. When I was dx'd it was explained that you need two of three tests to be positive. Tensilon, EMG, Physical Exam. At the time, that's all there was, but it was enough to call it. I am seronegative. I've had positive and negative EMG's, but tested positive on a Tensilon test. So far, I have the dx but it is being "tested" again. I will be going for an SFEMG soon. I respond very well to mestinon, so I am still holding the dx until it is disproven, per the new big-wig doc I saw at MDA today. Please be careful about how you are testing your strength. MG is a disease where repetitive exercise will fatigue a muscle. Your description of your home test and the results you're seeing (being able to do fewer and fewer reps) indicate that you are overdoing it. It doesn't have to be repitition all on one day. I notice cumulative affects all the time. If I go shopping one day I can pull it off, but go shopping that day, clean the next and I'll be wiped for a few days. By the same token, I can go for a month working long hours but by the end of the month I have overdone - it comes on slowly sometimes, as I believe it was Pat, said in the analogy with the frog and boiling water. Please give ALL your muscles time to rest! Do nothing but absolutely necessary motion - no "testing" for a while.
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Becky |
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#14 | ||
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Thanks for that.
I promise I wont get bored enough to try the strength thing! Love Rach |
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