AnonymousMarch 14, 2007 at 3:13 pm
Its been a month since my daughter had her first 2 IvIg’s and now she is complaining of her legs really being sore and tight with burning as if on fire. How does one know when they are having a relasp? Also being new to this (cidp) when she does get her blood work and spinal tap done what is it we are looking for and what are the ranges?
AnonymousMarch 14, 2007 at 4:43 pm
I have IVig treatments every eight weeks. Toward the end of that time, usually in week seven I get very tired and easily fatigued. These are my signs that it’s time for another treatment. I have only numbness so I can’t speak about the pain.
This is my second round of IVig. The first time around they added steroids about half way through. After 6 infusions I was on steroids only for about 6 months. But after 3 months of no medication the numbness and weakness returned so I’m on round 2. This time we are going to try Cellcept which is a medicine given to transplant patients. It has shown some promise in treating CIDP and doesn’t have all the side effects of steroids.
I had a spinal tap to help diagnois my CIDP but haven’t had one since so I’m not sure what your doc is looking for.
We all react so differently to the disease and to the treatment it’s hard to compare one case to another.
I hoped this has helped. Remember, you are not alone. We are with you but even more importantly God is with you both.
AnonymousMarch 15, 2007 at 1:15 pm
Hi Dawn, the ranges for cidp as far as the csf is concerned is anything over 45. sometimes the emg/ncv will show demylination or absent f waves or maybe both. be sure to keep a journal of your daughter’s symptoms, pain levels, type of pain, location of pain, ect. this will be very helpful to both your daughter and her dr. make sure you write down the brand of ivig, any reactions, premeds ect.. also. this will all help in the long run. just remember there is no right or wrong with this syndrome, no norm, or straight path to it either. keep a positive attitude and things will be better for all of you especially your daughter. take care.
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