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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Welcome to the group. You're among a lot of people who get what you're going through.
Where I live, there are some MG patients who are on regular plasmapherisis - if that worked for you for a bit, maybe you can get your doctor to get you on that until you get a better control on the MG. I understand that IVIG is not as quick as plasmapherisis, it takes several treatments for that to kick in... Brian |
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"Thanks for this!" says: | tk3891 (02-27-2013) |
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Junior Member
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Thank you all for the welcome. I do have an appointment this coming Tuesday because everything just seems to be getting worse so anything that could help that I should ask my doctor is greatly appreciated. This will only be my 3rd time seeing him.
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Abby |
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"Thanks for this!" says: | tk3891 (03-03-2013) |
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#5 | |||
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I hate to say this but finding the treatment that works for you MAY take a year or two.
Mike |
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"Thanks for this!" says: | tk3891 (03-03-2013) |
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#6 | ||
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so sorry to hear you are going through this and with a little one too! I got sick when my youngest was 6 weeks (my oldest was only 16 months at that time - so we had our hands full too)... it broke my heart to be sick and unable to care for them.. but they don't know the difference at least!
Are you Musk positive? As the others said about the IVIG.. i had only slight improvement with the loading dose (I couldn't tell if i was better due to resting in the hospital, or if it was placebo effect).. the 2nd round 3 weeks later seemed to really do the trick.. we have also had to play with the dosage of the IVIG.. otherwise some people just don't respond do IVIG and like others said just have to find the right cocktail - prednisone can make some people worse too.. or it can be the best med for others.. Are you at a local neuro or a university specialist? or MG specialist? |
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"Thanks for this!" says: | tk3891 (03-03-2013) |
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