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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-03-2012, 09:51 AM | #1 | |||
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Junior Member
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I post this because I guess I'm in need for good vibes. I've had a few EMGs, and then there was the one that I "epicly failed", that involved a needle and moving my limbs while the needle was inserted. Cried like a baby.
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.................................................. ........... 37yo, clinically diagnosed MG Aug 2012 Started Mestinon June 2012 *mestinon my wonder drug!* .................................................. ............. |
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07-03-2012, 10:31 AM | #2 | |||
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Good luck with your test. I hate pain. I don't even care for IVIG treatments.
Mike |
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"Thanks for this!" says: | restorativepose (07-03-2012) |
07-03-2012, 01:03 PM | #3 | ||
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It will all be worth it when they come up with a definitive dx!! Hang in there!
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"Thanks for this!" says: | restorativepose (07-03-2012) |
07-03-2012, 02:48 PM | #4 | |||
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Junior Member
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Test is done. It was painless.
The results were normal. I am feeling rather hopeless and frustrated. I responded very well to mestonin. But he has found nothing else to indicate its mg. You guys ever feel like giving up because no one can figure it out?
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.................................................. ........... 37yo, clinically diagnosed MG Aug 2012 Started Mestinon June 2012 *mestinon my wonder drug!* .................................................. ............. |
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07-03-2012, 03:44 PM | #5 | ||
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Junior Member
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Did they do the SFEMG just on your face or on your arm/leg too? You mentioned they would do it on your face, but perhaps you might have tested positive if they had done it on your arm or leg as well? I've heard some talk of doctors needing to be top of form to do the SFEMG. Mine apparently practiced on herself to help learn the nuances of the test.
Don't give up; it took 2 years, 4 neurologists, 2 rheumatologists and 3 primary physicians before they figured me out - and yes, I did want to give up sometimes because I felt unsupported and frustrated! Prayers and best wishes to you. |
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"Thanks for this!" says: | restorativepose (07-03-2012) |
07-03-2012, 05:10 PM | #6 | |||
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Junior Member
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A SFEMG actually hasn't been done yet. Thats what he wants to do next. He put the order in today, it'll be done at the local university.
The other angle he wants to investigate is a metabolic myopathy. So next steps are: - get MuSK test done - schedule SFEMG ... after those things possibly do a muscle biopsy of my quadricep. And good point about it taking time. So many of you went through years of this. That's amazing patience!
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.................................................. ........... 37yo, clinically diagnosed MG Aug 2012 Started Mestinon June 2012 *mestinon my wonder drug!* .................................................. ............. |
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07-03-2012, 06:23 PM | #7 | |||
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I was very lucky and got a quick DX from a Neuro-opto. However I am going through the same long process with my sister. I just keep poking her to keep going. She has been to "one of the best" neuros and 2 University but no DX yet. Next is bring her here to see my neuro or my specialist
Whatever you do DON'T GIVE UP!!!! Mike |
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"Thanks for this!" says: | restorativepose (07-03-2012) |
07-07-2012, 02:31 PM | #8 | |||
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Junior Member
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Ah the facial EMG. Fun stuff.... I found it awkward but funny at the same time when I got it done. I had it in my hand, then upper arm, then face. It was able to prove that I did have MG in my face, where my blood was still coming up negative.
I'm sorry it wasn't the result you were looking for. I know how you feel, I was very relieved when it showed on mine and my doctor said right to me as he was doing it, "yup, it's showing abnormal, you have myasthenia". Especially after it didn't show in my blood, and when other tests (like for thyroid, etc) were all coming up negative also. |
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