• Anonymous
      May 4, 2009 at 8:19 pm

      I’m reading posts, both new and archived, and something strikes me. Yes, there are accepted first line treatments, IVIg and steroids. But after that it seems that it becomes hit or miss, or something of an art instead of any strictly followed protocol. More like loosely followed protocol of further generally accepted medications and procedures (like plasmapheresis). A person’s outcome may be very dependent upon what their individual neuro believes “might” work based on his/her educated guess and in what order to administer things. And who knows how much unnecessary deterioration might take place if their neuro unintentionally “picks” the wrong course of action for them?

      The best way I can describe it at the moment is that it’s comparable to pizza, LOL. Two restaurants can use the same general ingredients (cheese, pizza sauce and pizza dough crust) and yet the pizzas can come out tasting very different…..

      I wonder, maybe additional loading doses of IVIg might do the trick for me, or maybe not, but I’m only going to be scheduled for maintenance doses once a month, so I might not ever find that out, whereas someone else might have a doctor who wants to try more of that then moving on to high-dose steroids so soon, as has happened in my case. Or someone else’s doctor might want to try plasma exchange before doing steroids. My doctor hasn’t even mentioned plasma exchange to me at this point. I still have to bring up the pulse steroids to him to see if I might be able to avoid the dreaded “moon face” and yet still have good efficacy. And then you also have the financial factor involved, too. I liken IVIg to “liquid gold”. Are further IVIg loading doses not being recommended for me because of expense? I mean, they all know I’m penniless and hoping medicaid will cover these expenses for me. I am a bit reluctant to be very vocal about things sometimes because I think I’m lucky I’m being treated at all under my circumstances.

      I guess what I’m trying to say in a nutshell is that I find it disturbing that either enough is not known or enough is not coordinated between so many neuros as to REALLY know just all the right things and in what order to do for each CIDP patient in what specific circumstances. Such as how mine didn’t initially want to try the steroids on me because of my diabetes so he opted to go for the IVIg first instead.

      Does this qualify as a rant? LOL Or maybe just a rude awakening to the world of a patient who has a rare disorder/orphan disease?

      I imagine all of our neuros, standing side by side, each with a table of the same ingredients and they have to throw stuff up on a wall to see what might stick. Some neuros choose to throw their stuff up in different order, based on what they think their ingredient’s “stickyness factor” might be. Some neuros choose to cut their ingredients up before throwing them, like a shotgun approach, and so on and so forth…..

    • Anonymous
      May 4, 2009 at 11:00 pm

      I like your analogy.

      To take it further, we’re all kind of like pizza. We start with basically the same “ingredients” but we end up so very different! Variety is the spice of life 🙂

    • Anonymous
      May 5, 2009 at 7:44 am

      I know I’m an odd ball! Couldn’t be simple for me! And they are still debating treatment for me because of the different health issues. Right now they have me on high doses of steroids and praying that works. So far it hasn’t! Now they are talking Chemo again but one with less side effects.
      Yes! We are all different and get experimented on using different protocols!
      With me I guess I have had several different pizza taste! Even one with anchovies! LOL! Hugs
      Linda H

    • Anonymous
      May 5, 2009 at 8:07 am

      I think you are in the “accepting reality” phase. And, welcome !

      You seem to be alot like me with a whole lot of thinking and wondering going on. At least you’re in the right place.

      well wishes,

    • Anonymous
      May 9, 2009 at 12:41 am

      I don’t think it is so much that the neuros are guessing on treatments; after all, any neuro who has a patient recently dx with CIDP can look in his textbook to see the first line of treatments. I think the problem lies more in that each one of us responds to the current treatments differently. I deteriorated so rapidly at the beginning of my illness & became so disabled from it, that I was originally dx with GBS. But when I didn’t respond to 5 plasma pheresis treatments, then 5 IVIGs, Mayo changed my dx from GBS to CIDP. Then solumedrol infusions were added to my already twice weekly IVIG infusions. I was still not even maintaining what little strength I had.

      Mayo came to the conclusion that I had one of the most severe cases of CIDP they had ever seen & that it was the progressive form. I was told by a team of 6 neurologists in July of 2002 that I was terminal. It took an extreme treatment of 9 months of chemo infusions at the Uof MN to stop the progression of my illness. I am not cured, as I still have residuals, but I am certainly much better than those days of a power chair & no use of my hands. I have lived a fairly normal life, since the fall of 2004, minus the tennis & downhill skiing. We are just all so different, I almost feel sorry for anyone doctor trying to treat CIDP patients…

    • Anonymous
      May 9, 2009 at 5:44 pm

      Hi Pam! It’s bad enough loosing your legs but then when the arms go too it’s really frustrating. My arms too are not as great as they used to be but at least I am trying my best to keep using them. My arms go out completely, I just won’t know what the heck to do with myself. They are about the only thing I have working. When they feel like it! Hugs
      Linda H

    • Anonymous
      May 11, 2009 at 12:25 pm

      Kind of embarrasing to ask this Linda, but how do you writte if your arms are out.
      When I have the numbness in my arms (mostly at night) I can no move them, can not feel anything, they are dead,
      until I manage to move them for some minutes.