Update – diagnosis now pure motor cidp

Interesting info. in your post. I didn’t know motor forms of CIDP had to avoid steroids–I thought it was only with Multifocal Motor Neuropathy. My husband’s CIDP is MADSAM with basically all motor symptoms and no sensory. He is currently on IVIG, but we were thinking that he may need to go on steroids due to cost. If Dr. Weiss has any literature on this it would be great for you to post it. Keep us posted with how your husband does please. I’m glad you got some answers.
Laurel

I have been where your husband is now, & for a very long time. I have/had a very severe case of CIDP & was refractory to IVIG, plasma exchange (PE), & solumedrol. In other words nothing worked for me at all, spent over 2 1/2 yr. in a power chair with no use of my hands. But this was back in 2002-2004, & it was 9 mo. of cytoxan infusions that finally arrested my CIDP at age 49.

I believe that everyone has a “magic bullet” with this illness, but since we are all so different, it takes a patient neuro to get it right. I hope for your husband that it will be the IVIG, although I would recommend an initial 5 day loading dose. I have studied CIDP for almost 9 yr. now & have never heard of solumedrol not being used for motor CIDP? Since it knocks down the inflammation, it is usual to always try steroids first, so that is new to me.

I am glad he has a positive attitude, that will take him a long way. I lead a fairly normal life now. Since 2004 I have been stable, needing no treatments after the cytoxan arrested my CIDP. I do need AFOs for permanent foot drop & take a cane outside the home. But I drive again, go out alone, do water aerobics twice a week & we travel a lot. I still host all of the holidays, doing most all the cooking & dishes by myself. If I walk/stand too long I get lower back pain, so I use a wheelchair for long distances, such as airports. There is life with CIDP, but one does need a lot of rest. Best of luck to you both, we have been where you are now, & I remember things looking pretty dark back then. But my life is good at 57, can’t complain. Heading back down to Florida on April 12th for 16 days, just bought a condo in Naples for the winter months (we live in northern MN!)

Pam:
You never cease to amaze me. I am 49 now myself and battling CIDP for the last couple of years (though not formally diagnosed until April of 2010) and feel extremely fortunate that IVIG has worked so well for me. My prayer is that it does as well for Marshall. I agree that there is almost always some treatment out there that will help in our battle against CIDP. It can be a journey of trial and error though.

Thank you, I have good days & bad days, but learned a long time ago that complaining to my poor hubbie, family or friends does not make it better; just makes them feel worse. I have also seen many in my age group hit with a myriad of autoimmune illnesses & cancer, so oftentimes CIDP doesn’t look all that bad to me. My best friend was just dx with Parkinson’s at 57, I suspected she has had something for a few years now. Left hand isn’t working right, drags one leg, slight tremors. This is one I don’t want… Also know some people with very bad cases of MS, & there isn’t anything that will make them any better. Sometimes when you put it all into perspective, CIDP desn’t look all that bad, even for those of us who got hit the worst.

[QUOTE=Pam H]I have been where your husband is now, & for a very long time. I have/had a very severe case of CIDP & was refractory to IVIG, plasma exchange (PE), & solumedrol. In other words nothing worked for me at all, spent over 2 1/2 yr. in a power chair with no use of my hands. But this was back in 2002-2004, & it was 9 mo. of cytoxan infusions that finally arrested my CIDP at age 49.

I believe that everyone has a “magic bullet” with this illness, but since we are all so different, it takes a patient neuro to get it right. I hope for your husband that it will be the IVIG, although I would recommend an initial 5 day loading dose. I have studied CIDP for almost 9 yr. now & have never heard of solumedrol not being used for motor CIDP? Since it knocks down the inflammation, it is usual to always try steroids first, so that is new to me.

I am glad he has a positive attitude, that will take him a long way. I lead a fairly normal life now. Since 2004 I have been stable, needing no treatments after the cytoxan arrested my CIDP. I do need AFOs for permanent foot drop & take a cane outside the home. But I drive again, go out alone, do water aerobics twice a week & we travel a lot. I still host all of the holidays, doing most all the cooking & dishes by myself. If I walk/stand too long I get lower back pain, so I use a wheelchair for long distances, such as airports. There is life with CIDP, but one does need a lot of rest. Best of luck to you both, we have been where you are now, & I remember things looking pretty dark back then. But my life is good at 57, can’t complain. Heading back down to Florida on April 12th for 16 days, just bought a condo in Naples for the winter months (we live in northern MN!)[/QUOTE]
I refused steroids as they affect my mood terribly. Went direct to IVIG, but although it has slowed advancement of syndrome, I am not regaining functions. I want to try heavy infusion of steroids, short-term, to see if this is any different and/or effective. Also still trying to find good neuro in Seattle,WA area or btwn there and Olympia,where I live.

I refused steroids as they affect my mood terribly.
I went direct to IVIG, but although it has slowed advancement of syndrome, I am not regaining functions. I want to try heavy infusion of steroids, short-term, to see if this is any different and/or effective.

I am also still trying to find a good neuro in Seattle,WA area or btwn there and Olympia, where I live. I would appreciate any information anyone has to share.

Thank God you found a new Dr. but shame on the jerk that didn’t see any rush needed for writing the rx! I’ve be thinking of you all and sending good thoughts. Hang in there.

There are reasons not to make a diagnosis official, most related to legal and insurances issues. I have two somewhat older friends with MS, both of whom have had it for 30+ years. Back then, MS was very hard to diagnose definitively and there was little to be done anyway. However, a diagnosis of MS would have complicated getting and holding on to insurance, for example. Consequently, both of their doctors did not give them a diagnosis.

I will say that when I was getting solumedrol infusions (prednisolone) that any effect I got was immediate, as steroids knock down the inflammation. It was enough to keep me out of a nursing home, but not to walk or have great use of my hands. The trade-offs were not worth it though, as the 21 months I was on them sure took a toll on me (gained 80#, had to have cataract surgery in both eyes back in 2004, made my bones thinner, etc.) IVIG is the best if it works I think, but it does not work for all…

I will be eighty on my next birthday and have had CIDP off and on for three years. The diagnosis took a while because the neurologist suspected either a stroke or cancer. Right now I am in remission but my legs are weak considering that I was a great walker before this hit me and I still go a couple of blocks when I can. I receive monthly infussions of both solu-medrol and Gamunex and at my age it is difficult to separate side effects-like compression fractures and catarats- from natural aging.