3 weeks home after IVGI symptoms worse unable to lift legs

Hi everyone feeling frustrated was diagnosed with GBS Oct 13 2014 hospital 2 weed complete body numbness burning like I have cement shoes to hip and oven mots on. 5 days IVIG then home symptoms worse legs when lieing down can not lift my legs more then a inch like being held down. Has anyone had a second round of IVIG it’s about 3.5 weeks that I had the first. My infusion time was about 10-12 hours could it be done again and in hospital due to leg issues. See neurologist on Thursday Nov. 20 2014 to have lower EMG’s done I do believe do to worsening symptoms I do need something. Looking for advice Dawn

Hi Dawn,

It sounds to me like you need another round of IVIG. Many of us (including myself) had more than one, some get them regularly (for CIDP). They are mainly intended to stop the progress of symptoms, and if your symptoms are still getting worse, then you need another "shot." (My opinion only, I'm not a doctor or medical professional.)
Your symptoms are fairly typical, however, so don't feel like you are alone in that. Actually, if you can lift your legs an inch, you are doing pretty well! It took me a couple months before I could lift them that much! Think positive, I think things will improve for you. Good luck!

thank you so much LanceB.. i must say its great to know people understand...

LanceB said:

Hi Dawn,

It sounds to me like you need another round of IVIG. Many of us (including myself) had more than one, some get them regularly (for CIDP). They are mainly intended to stop the progress of symptoms, and if your symptoms are still getting worse, then you need another "shot." (My opinion only, I'm not a doctor or medical professional.)
Your symptoms are fairly typical, however, so don't feel like you are alone in that. Actually, if you can lift your legs an inch, you are doing pretty well! It took me a couple months before I could lift them that much! Think positive, I think things will improve for you. Good luck!