February 21, 2012 at 10:14 pm

Thanks so much for your response!! They currently have the diagnosis of CIDP for me (atypical however). I have had two LP’s the first one normal (protein was 39 or 45 I think), the second one was 95, though that time I had meningitis it was found (the morning after my first day of IVIG loading dose- I was inpatient in the hospital). I have had THREE Emg/ncvs since this all started! The first one showed demylenation around my right knee (my first symptoms and most affected leg), but otherwise normal, the other two (though I don’t think anyone checked that knee again- they all only did more distal (but did go proximal and distal, and thoracic for the needle emg part) ) and the others were all normal!!
My reflexes have been atypical this entire time – “normal” or brisk, however they have been considered brisk my entire life… now my right and most effected knee is decreasing..
They have done autonomic nervous testing, which came back positive/abnormal (my heartrate has been out of control since this whole thing started), and nerve/skin punch biopsies which all came back abnormal, they say correlating with “inflammatory” neuropathy/cidp.. The GI symptoms that preceeded my neurologic symptoms have perplexed them since the beginning- my ANA went from mildly elevated to even more so (negative, to 1:80, to 1:640), and now have a positive CMV..
with not being the typical CIDPer.. i question the diagnosis at times.. well a lot! I still fear worse things – like ALS (my first doc was afraid that’s what it was until that first emg).. so anytime I find a possible other cause that explains my other symptoms I get excited!!
The loading dose of IVIG defintely helped.. the 1st maintence dose was A M A Z I N G!!! I felt like a new person on that 4th day.. i just hadn’t even realized how sick I was!!!! however, this last time (i got a virus/cold/fever etc), my IVIG didn’t seem to do anything : ( .. I’m now getting an infusion of an increased dose (now 48 instead of 30g).. I’m terrified that it was just a fluke that it helped so much last time, and it won’t help me this time.. and like I said I fear much worse diagnosis at times..