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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-29-2011, 12:52 PM | #21 | ||
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Hang in there! Just because blood work was neg...well, it still doesn't mean you don't have MG. Wait til results of MRI come in ... if negative (which is my hope for you) then the search continues.
Please let us know how things progress - we'll be thinkng of you. |
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07-30-2011, 02:12 PM | #22 | |||
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My bloodwork was negative for MG as well, as were the subsequent "standard" tests.
My doctor was willing to do a trial of Mestinon. Most people without MG can't tolerate even a tiny bit of it (some folks with MG can't either), so you might want to ask about a short med trial, just to see.... Did you get tested for Celiac Disease? You may want to also do a trial gluten-free diet for a week/month, just to see if it might help a little bit. |
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08-01-2011, 02:09 AM | #23 | ||
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I just found and joined this site today, but wanted to encourage you because I was not firmly diagnosed either for several months. Read Stellatum's note again. She/he is on the mark and parellel's my experience. You can be nerve fiber negative and single fiber negative and still have MG. If both of these are negative make sure they test you for the MuSK anti-body. They will not routinely order this test even if they suspect MG. Also, please please please, you must have a neurologist who has expertise in neuro-muscular diseases. Godspeed.
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08-02-2011, 01:24 PM | #24 | ||
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Thank you everyone. I'm still waiting for results of MRI and if those come back "clean", I guess I will then ask for the musk test? Are there days where you guys get out of bed weak and shaky? Feel a little better afterwhile and then bottom out again?
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