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Old 12-18-2015, 12:38 AM #1
ellez ellez is offline
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ellez ellez is offline
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Chat new to MG and here - with test questions

After 9 day hospital stay with what was once again thought to be stroke (left side eye/face droop) I was discharged with kinda/sorta MG dx pending labs. Lumbar puncture results still coming in- I can see them now on my pt portal. How long till all are done? It's been about a week. I see some levels reported but nothing too high. ANA/AChb neg but no anti-musk results back in yet. It was supposed to have been drawn last week.

EMG was positive.
Ice test - yes.
Mestinon works within half hour or so.
Without poz sero though I'm still not feeling legit about MG. Educating myself it sure seems like the signs describe my situation fairly well but I worry how much is in my head. Still have all the same symptoms for last few weeks. Fluctuating of course. Left eye ptosis still and muscle weakness all over - off and on. Worst with over-use and heat. Never will I take a hot shower to test the theory again.
*** I'm so confused, frustrated and stranded as I am not allowed to drive till after Neuro visit next week...maybe.
I'm pouring through threads and appreciating all the support and info I see, but again, in a way, I am still not sure I should be here. In the mean time, thank you!
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Old 12-18-2015, 07:20 AM #2
Plantagenet Plantagenet is offline
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Hi ellez seems to me here is exactly where you should be, though sorry you have joined our club MG is not nice.

You will find a lot of support and good info here and many people with a lot knowledge.

I hope your situation improves soon good luck.

John
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southblues (12-23-2015)
Old 12-18-2015, 08:59 PM #3
StephC StephC is offline
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Quote:
Originally Posted by ellez View Post
After 9 day hospital stay with what was once again thought to be stroke (left side eye/face droop) I was discharged with kinda/sorta MG dx pending labs. Lumbar puncture results still coming in- I can see them now on my pt portal. How long till all are done? It's been about a week. I see some levels reported but nothing too high. ANA/AChb neg but no anti-musk results back in yet. It was supposed to have been drawn last week.

EMG was positive.
Ice test - yes.
Mestinon works within half hour or so.
Without poz sero though I'm still not feeling legit about MG. Educating myself it sure seems like the signs describe my situation fairly well but I worry how much is in my head. Still have all the same symptoms for last few weeks. Fluctuating of course. Left eye ptosis still and muscle weakness all over - off and on. Worst with over-use and heat. Never will I take a hot shower to test the theory again.
*** I'm so confused, frustrated and stranded as I am not allowed to drive till after Neuro visit next week...maybe.
I'm pouring through threads and appreciating all the support and info I see, but again, in a way, I am still not sure I should be here. In the mean time, thank you!
For years I thought many symptoms were "in my head" and when doctors (who I think are too quick to tell patients that) told me so I was all too happy to believe it, please don't do that.

I think the best advice I could give is to find a very competent doctor with a lot of experience with MG that you personally are very comfortable with.
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pingpongman (12-18-2015), southblues (12-23-2015)
Old 12-23-2015, 11:28 AM #4
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Every now and then I still get the idea that it is all "in my head". Then I cut back on mestinon and falling on the floor clears my head and I realize I really do have MG as much as I don't want to have it.

You can imagine yourself up a limp. You can imagine yourself up shortness of breath, muscle weakness, etc. But I really can't figure out how to imagine up that wonky eye thing.
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