Reply To: Newly diagnosed with CIDP and Breastfeeding

June 12, 2017 at 9:06 am

Hello, don’t feel helpless and too depressed just yet. You are right, getting diagnosed early on increases your chance of having a good prognosis. But you do need to find the right treatment. Give IVIG another try. If IVIG does work it can be a good treatment. I was diagnosed and received IVIG within 5 months of my first tingling and I am 5 years out now since first diagnoses. I also was a young mother with a toddler at the time of diagnosis. It was hard because I thought I was going to be weak and feeling sick forever. But the IVIG really helped me. I initially received a large loading dose and then started getting about 35 grams every 3 weeks. I am not still at 35 grams but I receive it every 5 weeks as a maintenance. I am one of the lucky ones I guess because i was treated so early. As long as I receive my infusion I feel almost normal. I have very minor issues (usually when I am getting close to needing my next infusion). I have not had to modify my lifestyle much and kept up with my daughter. I am not chiming in to make you feel bad because I am not having problems. I am responding to let you know that CIDP is not a death sentence and hopefully you will find the right treatment and go on with your life as close to normal as possible. Nothing much has changed in my life except I have to have an infusion every 5 weeks. I no do my infusions in my own home and they are not as invasive time-wise either. What use to take 5 hours now only takes about 3 hours as I am able to run the infusion at a high rate since I do not have any side-effects from Gamunux. So cheer up and try not to feel too depressed. Your state of mind really makes a difference as to how your body responds to CIDP. I do know when I get stressed or depressed my symptoms return and I feel icky. I also agree with LMayberry, if the IVIG does not help within the next few weeks then insist on another line of treatment so you can stop this assault on your nerves so you don’t have any lasting nerve damage. Good luck. Take one day at a time but do know that you can live a productive and near-normal life with CIDP. I have CIDP, CIDP does not have me!