I'm new at this and trying to learn. After being in the hospital and receiving 5 treatment in 5 days then getting 1 a week for 6 weeks my neurologist plans to stop the treatments and wait 3 months to repeat the EMG she did before starting the IVIG. I'm scared to death I will lose the progress I have made and end up back in the wheel chair or worse. My doctor either doesn't know or cant communicate. Has anybody heard of treatment like this? Is it common to start then stop and wait to see what happens? Can anyone help me please.
I do know they will want to check progress - but stop? I don't think that is something you can afford to let happen if you can work out that you are going backwards in any way. If you can confidently say you are getting worse after seeing some improvement (or even just stopping getting worse for a while) then put the hard word on the neurologist AND/OR get a new one!
Being reasonably new to the CIDP condition I am still coming to terms with how I am going. I saw an idea somewhere else - keep a diary. Every day I now write a few words about what went on and how I was effected - good and bad.
Right at the start I wrote an entire page on every way CIDP was getting me - head to toes - what I could do, what I could not do, the pain, the psychology. I went out of my way to test myself far beyond the pain barrier (some would say the sensible barrier) to record exactly what I could do and just how it felt - things like - walk - fast - slow - how far before pain started - what did one step up stairs feel like - where did I start feeling real fatigue - how was my balance - where did I feel in danger ?
Now I have that record I can keep better track of my condition. I can better inform my physio and docs. They think it is great. I take a printout so they don't have to spend time digging for information and you get the entire message over very quickly. Then you get onto the important stuff - like your question!!
Michael C Stark said:
I do know they will want to check progress - but stop? I don't think that is something you can afford to let happen if you can work out that you are going backwards in any way. If you can confidently say you are getting worse after seeing some improvement (or even just stopping getting worse for a while) then put the hard word on the neurologist AND/OR get a new one!
Being reasonably new to the CIDP condition I am still coming to terms with how I am going. I saw an idea somewhere else - keep a diary. Every day I now write a few words about what went on and how I was effected - good and bad.
Right at the start I wrote an entire page on every way CIDP was getting me - head to toes - what I could do, what I could not do, the pain, the psychology. I went out of my way to test myself far beyond the pain barrier (some would say the sensible barrier) to record exactly what I could do and just how it felt - things like - walk - fast - slow - how far before pain started - what did one step up stairs feel like - where did I start feeling real fatigue - how was my balance - where did I feel in danger ?
Now I have that record I can keep better track of my condition. I can better inform my physio and docs. They think it is great. I take a printout so they don't have to spend time digging for information and you get the entire message over very quickly. Then you get onto the important stuff - like your question!!
Thank you very much it was very helpful. After exchanging 3 phone calls with the nurse the doctor will not get on the phone she is allowing me to have treatments every other week.
My now 19yr. old daughter was diagnosed w/ CIDP March 2011. The Dr has tried adding an additional week in between IVIG treatments. Side effects: she had symptoms of numbness in limbs and and overall weakness by day 4 of the extension which was a sign that the disease is still very active. There was recently new patient studies from the UK.
I am not a fan of her Dr. altering her standard schedule as she was also in a wheel chair in the beginning. The bottom lines is the emg and the extensions are really the only way to see if there is progress or remission. The Dr. should start your treatment back at the first sign of negative side effects.
Good luck