Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 03-28-2012, 03:04 PM #11
bny806 bny806 is offline
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Join Date: Nov 2011
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bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
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ejh2- REALLY??? that is really interesting? what were your symptoms originally that led them to diagnose you with CIDP? did you have any tests pointing that way? Did you ever try IVIG for that?? do you have facial/eyelid droopiness at all? Yup, the IVIG is a bunch of antibodies.. it worked GREAT the 2nd time (I had bad aseptic meningitis from the 1st time) and since then it sometimes helps pretty welll, other times not as much. They are going to start adding more meds now.. what treatment are you taking for your LEMS? What is DAP? It's also interesting that you have soreness at times- at the end of the day my eyes hurt to move- the muscles around them are just sore/fatigued! so strange!!

winic1- wow.. as far as the plate in your shoulder interefering with an MRI - I have stainless steel rods up and down my spine and they haven't interfered with my MRI's ever- They can't do the T3 ones (the stronger ones) due to possible interference, but otherwise it's not a problem. As long as the plate has been in there a few years I would think that they could at least do your head and attempt your c spine to get a better look! They are testing me for thyroid antibodies now too! and still trying to get into a neuro opthamologist.. apparently there aren't many of them around! best of luck!
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