Confused and scared

Hi everyone. Thanks for letting me join..definitely need some support right now.... I'm having my first IVIG next thursday and Fri. My Dr. said he only orders the tx for 2 consecutive days but he gives you same amount as if it were 5 consecutive days... He really doesn't have a definite dx yet though which is frustrating but says he 'thinks' it's cidp.
My CSF protein was normal but my NCV and EMG showed slowed conduction., failed strength test miserably. my sed rate, CK and CPR have been moderately elevated however, all other blood tests have been normal so I'm still wondering if I even have CIDP or if it could be something else. DR. said I have nothing to lose by trying the IVIG...hmmm, I wonder... Have any of you had an ambiguous diagnosis?


My Dr. told me that he believes this is CIDP, but if not he is sure that I have an autoimmune disease that would be helped with IVIG. So, his diagnosis was a tad ambiguous. I was treated for MS for four years and that Dr. and I have not had our day yet. I also have a tumor in my brain stem, midbrain, and my protein was very high at 123. But the tumor throws a monkey wrench into this whole equation. I have slowed response with EMG. As to the other blood tests, I am not sure what they checked or how it came out. I just understand that you can have CIDP and all the blood work and lumbar be ok. Crazy disease.

I am sure that you have had your treatment now, how did it go? Are you better? After my first I seemed to get worse with some issues but the Dr. told me that sometimes with regeneration of the myelin sheath you can get pain and so forth. I have found that to be the case as it is much better since my second treatment. First one was in July, end of, and the second round was last week. Both were inpatient and the first one was over five days, the second was supposed to be over four. I had to skip a day so it ended up taking five days. I get a high fever, flu like symptoms, and this time a rash and extreme itching. Even with pretreatment, I have a pretty strong reaction. Because the effects continued once I came home, if they continue with IVIG, I will always be inpatient most likely.