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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-03-2012, 07:43 PM | #1 | ||
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Junior Member
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Does anyone have a hard time breathing at night? So much so that your chest and upper body ache all day? I am. I have had MG for five years now and am on Mestinon and IVIG every two weeks. The Mestinon is four times a day 60mg. I need some help here I think. What should I do about this?
Thanks everyone! |
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09-03-2012, 07:55 PM | #2 | ||
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Senior Member
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Sounds like you need Mestinon Timespan! It's a slow-release version of Mestinon. You take it before you go to bed, and it acts all night.
Abby |
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09-04-2012, 03:33 AM | #3 | |||
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09-04-2012, 03:55 AM | #4 | ||
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Junior Member
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When was the last time you saw your neuro? If this is a new development I would definitely pass it by him and be evaluated to see if your current treatment plan is effective - MG is a continually changing disease and what worked 6 weeks ago may need a tweak now and then. I'm assuming since you're on IVIG every 2 weeks you are being seen more often. To make treatment plans effective there has to be close communication with your doctor and both of you need to work together - it's much easier now to do that in this age of electronic hospital records and email communication with your healthcare team. Have you spoken to your infusion nurses about this - many times they will mediate for you to the prescribing MD if they notice something "is not right."
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