Reply To: Recent CIDP diagnosis

March 12, 2018 at 8:29 pm

Hi John, My name is Jeff and I live in Houston. Was diagnosed like Bryan in December of 2016. It helps me to follow Bryan’s progression as we started our lives with CIDP at the same time. At the beginning for me, it was the unknown that was so hard to understand so all the folks who have replied to you here helped me quite a bit. To just understand more and really to accept more. I was never prescribed steroids, which I am thankful for, and what has worked for me has been the drug Lyrica to control what Chirpy Birdy calls the creepy crawleys that the nerve activity can cause. I get IVIg infusions of gammunex once every three weeks. Takes about 3 hours. Everyone is different with their symptoms but it helps to hear from others that for whatever reason got this rare condition. A positive attitude is important but there will be times that you will need to play the “why me” card and that’s ok. Just know that for most on this board things have improved, slowly but surely. It is a shame that it takes so long to get into to see the experts and I was lucky to be diagnosed early. I think it is why I have not had it too bad and I have improved within the first year. If you have questions, get on this forum and ask. My questions were also answered and at times helped talk me off the ledge. Good luck with the CIDP expert meeting, hope you find a doc that helps you.