Reply To: Another Newbie
Hi Dee – Welcome!
I’m wondering why the dx of CIDP first. Most people get a GBS dx then once they relapse they get the CIDP dx. I find it interesting that you got the CIDP first especially since the symptoms you stated could have very easily been associated with GBS.
I don’t have anything nice to say about Prednisone. I think it’s an awful drug personally & not really worth the side effects. If it were me, I’d be bugging the dr’s to get me off of it. But many people do get better with them & they have helped people live nearly normal lives. I’m glad that you feel it is working for you. You’ll find that most everyone has a different opinion of it – some feel like it’s been a life saver while other’s hate it. My advice is to just do what you feel is right for yourself and RESEARCH, RESEARCH, RESEARCH.
IVIG is scary at first but I think it’s safer than steroids. With IVIG there are many less side effects & most people can go on living their lives looking like nothing is wrong with them while taking it – as in there are no outward showing side effects like the puffy face & weight gain with ‘roids. With IVIG you just have to figure out the right frequency & dosage for yourself & then you take that one day to get your treatment & then your done until the next treatment. IVIG was our lifesaver!
My daughter has CIDP (dx’d at 4 – now 6) and had inflammation on her cranial nerves. I believe it was cranial nerves 6 & 7…but my memory isn’t so great with those details anymore. She had an MRI about 11 months after her original dx of GBS & her cranial nerves were no longer inflamed. Her right eye was paralyzed facing in towards her nose but is pretty much perfect with regular IVIG treatments. She gets 20 grams every 2 weeks now. Prednisone made it worse…thus the explanation as to why I don’t like it.
I wanted to comment on you calling CIDP a “hideous condition”. You know…it does sucks, I’m not going to lie. And I think as a mom of a child with it I can say it sucks big time! But you know, I try to tell myself that it’s not the worse thing in the world to have. There’s treatment for it & medical advances being made nearly everyday towards better treatments & hopefully a cure one day soon (my prediction is within the next 4-5 years or so). People do recover & can lead almost perfectly normal lives…it might be a different normal but at least it’s some sort of normal.
When Emily was first dx’d I kept repeating to myself “You are the mother of a sick child” until it sunk in. Once it was perfectly sunk in then I could face it head on & begin the fight. I think that’s the best way to accept it – you just keep repeating it to yourself constantly. One day, you’ll finally truly accept it & then you can move on.
We try to not let CIDP run our lives. Our mantra is “Emily has CIDP…CIDP does NOT have Emily.” That means that we want to control the disease and we want to control our lives, not the other way around. It’s easy to fall into the disease & the treatment running your life & it will happen in the beginning while you’re still figuring it out – but once the dust settles & you get into a treatment plan then you can really take hold of the reigns & live again. CIDP is not a death sentence by any stretch of the imagination! Remember that on the bad days…and there will be many – but you will get through them.
One of the great things about this site is that the people here offer TREMENDOUS amounts of support. If you need anything they are here for you. I know that I would have never made it through this the way that I have if I didn’t have these people.
Good luck,
Kelly
PS, remember GOOGLE is your new best friend. Anytime there’s something you want to figure out, go there!