Thanks for this. I do feel a bit left behind I had the IVIG in August and not had anything since. Been to doctor, he only gave me different painkillers. Seeing neurologist in 2 weeks, I’m just conscious that time is going on and I’m just stuck as I am.
I’m sitting here weeping because I have found y’all. I have been so alone and now…people who understand! Thank you.
Hugs for you! Yes it’s a lonely place when you have no one to share in this experience! I was there too! I still can’t believe how many others are suffering like me. When I was diagnosed 10 years ago there were no support groups to find. This is a mixed blessing. So very sorry for all others who have this disease, but a comfort at the same time knowing we are not the only one. Bless you my friends!
DocMac said:
I'm sitting here weeping because I have found y'all. I have been so alone and now.....people who understand! Thank you.
Just occurred to me to add that your IVIg dose depends on your condition. In my case it was 5 doses in 5 days to start then one every 4 weeks after that. Others have different timing. My neurologist indicated that painkillers are of little use though you have to remember that CIDP tends to be just a little different for everyone. I suspect that depends on just what stage the diagnosis happened and how it started.
My impression is that of all the treatments, IVIg is the one that is the safest single treatment with the least side effects for people with straight CIDP and no other complications.
victoria said:
Thanks for this. I do feel a bit left behind I had the IVIG in August and not had anything since. Been to doctor, he only gave me different painkillers. Seeing neurologist in 2 weeks, I'm just conscious that time is going on and I'm just stuck as I am.
Hi,
I was diagnosed in January 2012 and it's been an up and down experience. I received numerous IVIG treatments at first and it worked very well but by August 2012, my body no longer responded to the IVIG.
I've now been switched to a Plasma Exchange treatment. This started with 5 treatments, every other day and now I'm down to 1 treatment, every 2 weeks. We're hoping this can be stopped or down to once every 4-6 weeks over the next few months. Meanwhile, I've started on Steriods - Prednazone but it's only been 2 months so not sure if it is helping or not.
The result of the Plasma Exchange was amazing and quick. When I went in for my first treatment, I was in a wheelchair and unable to stand up - I needed to be helped from the chair into the bed. Within 48 hours, I could stand and shuffle a bit but needing to hold onto things for balance. Within 4 days, I was walking and could traverse up and down a couple stairs.
After the 5 treatments, I was almost nearly recovered, walking 2 miles a day and have almost full use of my hands and feet. It's been 4 weeks now and no relapse.
I have numerous Neurologists involved in my case and they all seem to agree that it's trial and error. They collectively seem to know of numerous types of treatments and some work on some people and some work on others. Lucky they all seem to communicate with each other and collectively switched me from one treatment to the another and so far, it seems to be working.
Good Luck
C
Hi Gary,
You mentioned that diet and exercise can help. Could you point me to more information on diet. I'm not aware of anything specific and would appreciate any information you might have.
Thanks much - C
springmang said:
I myself was just diagnosed this past March although I suffered with CIDP for the past seven years. In my research I've found that the cause is still unknown and there is no "cure". Exercise and diet can help towards remission, and that's what I'm working towards, but there is no guarentee. Gary
Hello-I'm in the same boat as you and so many others. I've been getting worse over the last 5 years and only this Spring when they did a nerve biopsey was I finally given a diagnosis. I have a name for the issues but no answers to my future or how this is going to go-I'm told I'm in "slow decline". Both my legs from the knees down are a disaster-I have to wear leg braces on both since I have drop feet and fall all the time. I want to know if this disease will spread into my hands and arms. I want to know if I'm looking at being in a wheel chair in the future and of cource there are no answers. I do the best I can, try to diet and exercise-was told exercise is essential. I did the IVIG treatment and it didn't do a thing. What little I've read about this disease is if the treatment isn't done rather quickly when the systoms start, the damage is done. I go to my neurologist this Tues-he' really good at trying to see me pretty regular. I was wondering about steroid treatment and have read by some of our group that they found no help with that. I always try to remember that everyone gets "something" and as long as I can remain independant I'll deal with CIDP. I just wish more was known about this disease. Hang in there-being on this site is wonderful!!!!
Hi,
I am one who has successfully gone thru the Stem Cell Transplant (SCT) in Chicago and if you have failed at 2 types of treatment, I would try to get to Chicago ASAP and get in to the program for the SCT if at all possible. They will test you to make sure you qualify (just ask your insurance if you can do it as a 2nd opinion) and they will be in contact with your insurance to see if the SCT can be covered! Go to the site Julie Ann mentioned above or clinicaltrials.gov and in the search bar type "CIDP and Chicago" for info. Also, I have a blog about my transplant: wendyssct.blogspot.com
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