Reply To: Exacerbation โ€“ scared

June 11, 2012 at 3:51 pm

Thank yall so much!!! That is interesting kelly, that emily also had pain behind her eye- did they ever say it appeared like she had attacks of Optic neuritis?? I saw a neuroopthamologist a few months back – he said it appeared as if I had ON in the past (in the eye I had gone to a suburban opthamologist about in the beginning- at the time he said it was fine- i had no idea 2/3rds of the time it looks fine on their exam when it is acute).. The neuro opthamologist said he sees eye involvement like mine at least once a month from CIDP patients (there are only 6 of these drs in Texas, so he sees a lot of wierd stuff apparently). Each appointment is about 5 hours there ugh.. but I do need to head back again for follow up
Do yall know if I do go get a second opinion if the dr puts down a diagnosis for billing purposes that isn’t CIDP that insurance can “choose” to take their diagnosis and then “opt out” of paying for my IVIG? that’s my biggest fear!
Kelly – you are right, I would spend everyday in a dr’s office fighting if it were my kiddos… that is a good point.. and most of all above anything I need and want to be here for them for the long run!
Limekat- funny you mention that – I had weeks where I would kind of drool, and spill drinks on myself, either missing my mouth or just mouth dysfunction in general! Before I got my first round of IVIG I tried straws.. but (how sad is this) I coudln’t even make enough suction to suck through a straw!!! It took all the effort I had and seemed SOO hard I coudlnt’ even do it.. same thing If I blew my nose it would go all funny ,… I was WEAK! Now I can use straws and when my swllowing gets bad it is easier! interesting about your eyes- bright lights hurt mine all the time now too!

Thanks so much for all of yalls help (this last round of IVIG has worked wonders)however I am 11 days out and do feel it starting to wear off.. I danced around with my kids yesterday – showing my daughter some old ballet moves, haha.. I haven’t been able to be that p hyscially active in a year.. felt SOOO good.. I just want to go for a jog!!! though that would probably be a bad idea! I miss working out!
Limekat- haha I know, I don’t realize how much I say yall (when I lived in the northeast everyone would laugh at me for it haha) now i’m back down here and saying Yall just makes sense! ๐Ÿ™‚
Thanks again so much for all of yalls help! I really appreciate it!!