Reply To: Exacerbation โ€“ scared

June 14, 2012 at 9:12 pm

thanks so much yall!! The polyclonal gammopathy was found when I was in the hospital when i initially recieved IVIG.. it was found in my csf.. no one ever told me anything about it, but in their note they said it was likely a result of the IVIG.. I guess sometimes I wish looking through my records I would find a clue that would explain this all and it would be as simple as one surgery or one something and be cured! ๐Ÿ™‚ One can dream huh?
As far as the papilledma goes- I have had three MRI brains- no tumor was ever found.. I had a spot on one of them – they just said a UBO (unidentified bright object).. I am thought to have possible celiac diease (all of my symptoms started after the IUD incident but that was followed by major GI symptoms and weight loss) when I read that you can have neuro symptoms with the celiac issues I have since (for over a year now) been on a strict gluten free diet, anyhow apparently if you have neuro celiac a lot of those people have UBO’s on their MRI’s too!?
I wonder if the neuro opthamologist coded that on accident- He told me I had nerve loss, looked like possible past optic neuritis on my left eye.. but said my right eye was normal. he didn’t even MENTION ANYTHING about papilledema, though he ordered a new MRI brain with orbits (which was normal).. I would have thought he would mention that- in his note it said I had pale optic discs BILATERAL, after him telling me i only had that in my left eye, i wonder if he got click happy and accidently checked that.. I was supposed to follow up with him in 2 weeks from that appointment, but each appointment lasts about five hours and they dialate you everytime, so I just cancelled as I just don’t have the time! But with reading that note, I guess I need to go back, and make sure he talks to me more face to face!! Also he is the only dr that has noted my ptosis! I have told everyone that I noticed my eyelid fold change form the beginning of all of this (i went to put on eyeshadow one day and thought how wierd my eyelids were totally differnet), they feel so heavy- when i’m more symptomatic they droop even more (eyebrow and eyelid).. he noted this in his chart without me ever mentioning anything.. huh?? I sure wish I fit into a pretty little box of something treatable(weather it be cidp, MG, etc) so that my mind didn’t wonder and start thinking of the bad things!!
thanks again for all of yalls help!! I’d be lost without yall!