It is your decision but I would not put the five days into 2. I had some really bad side effects after the 5th treatment. I would be afraid to get that much meds in 2 days. Whatever you decide, wishing you good luck. Jo
My Neurolagist who is the best in the area ( all others sent their patients to her for second openion ) has me get my IVIG slowly over a six hour period , she said there is less chance of side affects that way
Mary
Thanks mary, I am going Monday & will tell them to push it slowly. After that last headache, I am pretty nervous. Jo
I have CIDP. Have been IViG for 21 months now. Was 5 days a week, once a months for 17 months, now 5 days a week twice a months. Started Cellcept in December, first 500 mg for one week then 500 mg twice a day but developed shingles so dropped back to 500 mg once a day. In April, started 2x a day on Cellcept again and the IViG every other week. The main difference between CMT and CIDP is CMT cannot be treated whil CIDP can be; also CMT is heretary; CIDP is not. The only real hope is remission for CIDP is what I've been told. My next step is Plasma Exchange, which require ~ two weeks in the hospital. Northwestern Hospital in Chicago is also doing a stem cell therapy study.
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I want to say thank you to Jo for the infor about doctors I'm giving it a try Jo thank you.
I learn so much about what works for you all...I think I am learning how much we are so alike in some ways....
I think it is horrible to go thru by oneself and not understanding what it is all about I am very greatful that there is this place here that I can come and learn and understand what it is I'm might have and going thru that I am not by myself....I am so greatful for you all...and wanted to say it.
Today is another try at finding out what is it after all....I too have GI problems and breathing problems maybe effected by whatever is happening to me.
But I do have back problems that might be all it is? Maybe my back pushing on the nerves is my problem or is it?
I am searching like you and others....I think that I need to ask do I need this puncher in my back to fig out once and for all if I have CIDP or??? will mind be like Jo's and be normal...most of my blood work never shows nothing...
it is more frustrating to me to always be told everything is normal....but I don't want what is going on with my body....why would I make it up?? why would anyone...there is something wrong. So I keep pluging away.
maybe I will be lucky like some of you like JO find the right doctor that will know and do the right tests once and for all and understand what it is happening to me?
Please God that is all I ask...right now.
thank you for reading my posts.
ruthie