Hi Paul I am a ex truck driver that has CIDP , I could not see myself getting up and down from the cab, or maybe move cargo around with my muscle weakness. I find the fatigue would make 10 hours driving about impossible. I did retire early and was approved for SS disability, wish I was still working to help pay for the IVIG treatments.

Sandra I have giving my good points about plasma exchange but the more I think about it I should tell you what I hate about it. The procedure to do the ports can be scary, for my first exchange a groin port was put in with local numbing med and I did not like I was able to see doc do his work. The other 2 times I was knocked out and a chest port put in, I had no problems with meds or the port but I did developed a tape allergy that change how port was taped down. I am not sure what kind of port you may get because of your body not responding to IVIG maybe Jim could help with that. Also I could not do this as a out patient procedure because risk of infection but it could be the type of port used on me.

I have had plasma exchange the first year of my CIDP treatments, all 3 times I entered the hospital unable to walk. My progress with each stay was the first exchange I get my legs back the next day then with second exchange I got a big boost of energy and foot drop is gone, walking normally and am able to bend down and tie my shoes. The 3rd exchange is the frosting on the cake! my symptoms are all gone and I am wanting to leave hospital right away. I hope your experience is like mine the hard part is staying in a bed when I feel great but because I entered a fall risk the nurses kept me on a short leash.

I am having problems having enough energy to get work around house done, I think the hot summer temps are having some effect but its never been this sever. My gf says I can fall asleep faster then Bolt can run the 100 meter and I have not stopped any meds. not sure if cidp is getting more difficult or what, anyone else getting dragged down by hot temps ?

My insurance will not let me use emergency for cidp the cost is on me then, my neurologist told me the same thing if i get too weak then go to emergency only because he didn’t want admit me into hospital. I have read that symptoms lasting longer then 3 months are a sure sign of cidp I am not sure what would happen if you go to emergency I think a staff neurologist would look you over and get the history then consult your doc. The last time I got plasma exchange I had to get wheeled into hospital and because I waited too long I had to get a extra treatment to get back my balance and strength. Better to bitch now get a treatment started and then worry about what it is called because GBS and CIDP use the same treatments.

Hi glsm I have had this wonderful thing call cidp or as I refer to it my “ball and chain” for about a year. It took 6 months for my case to degrade enough for treatment of PE there after my time between treatments was 6 weeks rather costly for only a few weeks respite. I have been on Prednisone 60 mg for 2 months now with 2 more to go before I get weaned off it, hoping for a remission type of thing but for now I am able to function around the house at least, work is out of the question for me too much physical labor gives me waves of tingling down my body as a warning sign. Of course everybody experiences CIDP differently I am lucky mine is mild I do agree a second opinion should be investigated my first neurologist was too inexperienced with CIDP he referred to University of Michigan Neurological Dept. and me new doc was more open about various treatments. I feel one or another treatment will be my magic pill just gotta go thru the normal progression. I wish you luck try not to get bummed out, the people on this site have helped me compare my symptoms to others and that helps knowing others have been thru this experience too.