MNsue Posted February 6, 2007 Report Share Posted February 6, 2007 I have been having issues with left sided weakness since christmas along with tachycardia. Two weeks ago, my left eye muscles decided to join my left arm and left leg in their protest to work properly. I have been to the neurologist, and nothing shows up on MRI's or EMG's. In the past high dose steroids have restored order, however my body has decided to boycot these as well. I believe my next step is IVIG. Has IVIG been helpful to others? Can anyone else give me the up's and downs of this treatment. I wish someone would study the combination of POTS and undiagnosable muscle weakness. Rhonda Quote Link to comment Share on other sites More sharing options...
Sunfish Posted February 22, 2007 Report Share Posted February 22, 2007 hi rhonda -i don't have it in me to write out an entire post at the moment but i pretty much chronicled my entire IVIG experience in various posts on the forum over the past year or so. i know of only one other person on the board (that i can recall at least) who has undergone IVIG as a treatment for some type of dysautonomia. the last i heard she received some benefit from it but that was quite some time ago. for me it didn't do anything positive and actually caused problems after-the-fact that, if we had continued, could have been horrific in that i would have gone into liver failure, but - as with many things as they relate to me - that's not the norm. there are several others who have had IVIG for other diagnoses (i.e. immune deficiency) wherein there are some similarities but also some differences (in terms of how the treatment is done).but anyway, here are most of my earlier posts that contain extensive discussions on my IVIG journey as well as (much briefer) posts from the other member who had the treatments:http://dinet.ipbhost.com/index.php?showtop...659&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...123&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...433&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...489&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...687&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...864&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...998&hl=IVIGhttp://dinet.ipbhost.com/index.php?showtop...030&hl=IVIGit's a good deal of reading but there's lots of info within so i hope it helps, melissa Quote Link to comment Share on other sites More sharing options...
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