My sweet Mom was diagnosed in Oct.2011. She went from working 15 hour days, to most days needing a walker, and hospital stays since. She is home now, walking with a cane. cannot do steps anymore. She had IVIG three times …five six hour long infusions in Oct., Nov., and December. She is now unable to get a good nights rest because she says it feels like a jackhammer inside of her legs and hips, tingling and horrible restless legs! She has to try to keep her legs moving. I was up with her all night, on and off, and she simply could not sleep. Her excruciating hip and leg pain has subsided so much…horrible for her, but no extreme pain like that in almost a month. For that we are so grateful. Is horrible (internally jumping) legs part of this? Does anyone have any words of wisdom? She is trying to work full time, and impossible to continue to do if up pacing all night. Is CYMbalta better to take in the morning or evening, seems to make her stay awake? She seems to have a few good days of walking with cane, then a quick decline and back for more IVIG. Thank you to all. May you each heal and regain your strength!
Wanted to add that my Mom is 64 yrs. young, and came in to this with bursitis in her hip. She is also a stage 4 colon cancer survivor…with 40 radiations to pelvis and hip 27 years ago. Has been cancer free since, and the only infection was a gastrointestinal infection that lasted two weeks immediately prior to onset of CIDP. No flu or flu shot. What seemed to have triggered this syndrome for all of you?
My first IVIG should be in the upcoming weeks so I can't add anything of information. From what I've read, CDIP and how IVIG works on a person are so varied that it's very individualized. Frustrating, and maddening. Oh well, it's a rare disease and as my wife says, we are rare people! Prayers and best wishes to your Mom.
Thanks so much Joe, and hopefully your IVIG treatments will be very successful in helping you to get some relief and healing from your symptoms!
The only thing I know that might have "caused" my CIDP was an immunization (vaccine) for hepatitis A. My nurse says her other IVIG patient had the same vaccine and developed CIDP. Now this is just a guess and the benefits of the vaccine far outweigh the risks of having Hep A. I had the vaccine a couple of months before a May trip to Nicaragua and noticed my first symptoms about 2-3 months later. Of course, if I had it to do over.......
I was 62 when my symptoms started and have had excellent health previously. My vaccine was in preparation for a mission trip to Nicaragua. It was recommended but not mandatory. Who knows?
I might add my neurologist believes this was not necessarily the reason but he nor anyone else knows why we get this.........wish your mom the best.
Wanted to add that my Mom is 64 yrs. young, and came in to this with bursitis in her hip. She is also a stage 4 colon cancer survivor...with 40 radiations to pelvis and hip 27 years ago. Has been cancer free since, and the only infection was a gastrointestinal infection that lasted two weeks immediately prior to onset of CIDP. No flu or flu shot. What seemed to have triggered this syndrome for all of you?