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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-23-2014, 06:57 AM | #1 | ||
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Junior Member
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I am in Day 3 of 5 IVIG and I feel so tired and weak. Does anyone know when this starts to help ?
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01-23-2014, 02:17 PM | #2 | ||
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Member
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for me I noticed that the 2nd day I had some mild improvements... then the improvements went up from there, however, when I get meningitis I am stronger in some ways from the IVIG and weaker in others due to the toll the meningitis/IVIG does to my system. The biggest improvement for me is usually day 4 after IVIG.. and the BEST improvement was the 2nd round of IVIG (I got the first 3 days in the hospital and felt better... but then 3 weeks later got a maintenance dose and it was like WHAM all back to normal).. The dr's told me it takes some people a few rounds before they notice an improvement. GOOD LUCK!!! drink lots and lots of fluids!
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01-28-2014, 09:36 AM | #3 | ||
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Junior Member
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Thank you for the Info. I am new to all this and the Drs. and nurses sure didn't explain or no the answers to many of my questions.
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"Thanks for this!" says: | bny806 (01-28-2014) |
01-28-2014, 11:30 AM | #4 | ||
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yea, I think it's hard for them since they haven't been through it personally themselves..this forum helped my sanity while i was in the hospital.. and is also the reason that I told the staff to slow down my infusion rate therefore controlling my side effects- the staff didn't mention rate at all to me.. thank goodness for the internet!
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01-28-2014, 01:54 PM | #5 | ||
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Junior Member
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Quote:
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01-28-2014, 10:16 PM | #6 | ||
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Member
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I am actually still a mystery - LEMS is high on the list though.. I became sick after a surgical procedure gone bad about 6 weeks after having my son.. I was sooo sick and weak for about 6 months before I completely crashed and ended up in the hospital and they started IVIG.. they don't know exactly what is wrong with me, but just know IVIG works and i have many characteristics of LEMS and MG.. with a very strong family history of autoimmune issues. so who knows!! oh, and I've been getting IVIG for 2.5 years, so I have been sick for 3 years now.. I went from running, surfing, skiing, to just hoping I can eat, walk swallow, breathe and carry my kiddos... it was so hard.. and still can be some days.. but I'm so thankful I"m still on this earth, walking, talking and working still.. life will never be the same
Last edited by bny806; 01-28-2014 at 10:16 PM. Reason: change |
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