So sorry it’s taken me this long to get back…
jerimy, thank u for replying. wish i got back here sooner. the problem is w/getting medicaid. they would pick up whatevr medicare doesn’t as well as provide for inhome care and more. unfortunately, ex got into major trouble w/irs and been in the midst of getting what they need to take the “levy they have off my ssdi check” – !! won’t bore w/details but, one affects the other, affects the other, affects the other – it’s a mess. eventually will get settled- trying to make it thru the meantime. checked into supplemental med.insurance, can’t afford the monthly premium till irs reverses.
i was wondering about plasmaphar? a doc recently asked if i was/will be on that. don’t know much about it yet so don’t know how much more invasive it is than ivig. gotta be bad b/c ivig seems pretty invasive from what docs/infusion ctr have told me. and side effects. which is ok – i;ve been ready to do whatever i have to do even tho no guarantees. i recently read somewhere that some docs are now using chemo for ivig?
sounds like ivig has/is making a difference for you? good results? have you been on it for 3 years?
and yes, my biggest concern and reason i’ve been on top of and pushing docs/infusion place is b/c it does progress (whether i tell it to or not!) – now i’m actually getting nervous. and now is 10 times more difficult than 2-3 months ago trying to do/think ANYthing. it’s a catch-22 and i gotta keep on top of it. its just so frustrating and overwhelming wanting to/trying to and my freakin body ends up winning. don’t mean to whine here – everyone’s gone/going thru their own battles. and i will check out the website. thanks.
again, sorry it’s taken me so long to get this up and running again. dj
I have medicare/medicade and I have no issues whatsoever getting my infusions every month. In fact they just doubled my dosage from 30grams to 60 and I didn’t have any problems. Personally I would prefer IVIG over Plasmapheresis but that’s my opinion, PP is more invasive. When I first got CIDP 3 years ago I had a social worker at the hospital that helped me with all of the issues with SSI/SSD and medicare/medicade. If your having issues see if someone at the hospital can help. The longer you wait to begin treatment, the more damage that is occuring. Also I am able to get my infusions done at home trough the hospital and have no issues, that is something else a social worker at the hospital should be able to help with.
Check out [COLOR=blue]cidpusa.org[/COLOR] (cut and past into browser) for lots of information regarding treatments and other related things. I hope that helps with some of your questions.