# Feeling Lost... Newly Diagnosed With CIDP **URL:** \ **Category:** Blog\ **Created:** [April 9, 2013, 3:32am UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-lost-newly-diagnosed-with-cidp/1172 "2013-04-09T03:32:20Z")\ **Posts on this page:** 5\ **Page:** 1
**Author:** ![Rachel](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/rachel/32/481_2.png) [@Rachel](https://forum.livingwithpolyneuropathy.org/u/Rachel)\ **Post date:** [April 9, 2013, 3:32am UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-lost-newly-diagnosed-with-cidp/1172/1 "2013-04-09T03:32:20Z")
My name is Rachel and I was just diagnosed with CIDP at the end of March. It has been a long journey and it seems far from over. I think mostly what I am feeling now is confusion and an overwhelming feeling of despair. I have always been very healthy. I am 24 years old, eat well and used to work out 4-5 days a week. I'm a full time college student and up until about a month ago, I had been working full time as well. I just don't understand how this could happen to me. A few weeks before being diagnosed, I had such a bad fall that i fractured my leg. I've been in cast since the beginning of March and will continue to be in one for at least 3 more weeks. Getting to school has become extremely difficult. I've always been very independent so having to become so dependent on others is killing me. I feel like such a burden on my family, friends and boyfriend. Concentrating on school work is becoming impossible. I've always been such a good student but I'm finding it almost impossible to care about my studies. I'm seeing a Doctor at U. of Penn and he started me on Prednisone 11 days ago. I feel a lot stronger physically but emotionally I'm a mess. I just don't know what to do. I feel like no one understands. ---
**Author:** ![KevinK](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/kevink/32/321_2.png) [@KevinK](https://forum.livingwithpolyneuropathy.org/u/KevinK)\ **Post date:** [April 9, 2013, 4:10pm UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-lost-newly-diagnosed-with-cidp/1172/2 "2013-04-09T16:10:46Z")
Hi Rachel, I was diagnosed about this time in 2012. I share your frustration, although I am a lot older (now 61) I assume, like me - you never even heard of CIDP, and many primary care physicians are unaware as well since it is so rare. The best advice I can give you is to find a neurologist who is familiar with CIDP and its treatments. I have IVIG treatments evey 90 days and it seems to help a lot. You will learn a lot from this and other web sites. As far as the cause, Not sure anyone really knows. I have heard people that have had new vaccinations, flu shots get CIDP, but I did not have any of those. Severely diabetics can be another cause, but outside of that I don't think there is enough information ---
**Author:** ![mivida](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/mivida/32/480_2.png) [@mivida](https://forum.livingwithpolyneuropathy.org/u/mivida)\ **Post date:** [April 13, 2013, 5:26pm UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-lost-newly-diagnosed-with-cidp/1172/3 "2013-04-13T17:26:40Z")
Hi Rachel It took almost ten years for someone to finally diagnose me. I also took many falls fractured ankle, torn my meniscus, sprained various muscle ...went from walking to this wheelchair. I haven't started treatment but probably will in a week or so. I was so independent and it was extremely hard for family to understand why I can't walk. It made it worse for me. I finally just started to have them read about this disease and have them get a handle on what I have been going through. I still am trying to figure it out and I do know this from reading other people's struggles we can't give up. ---
**Author:** ![R\_Johnson](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/r_johnson/32/361_2.png) [@R\_Johnson](https://forum.livingwithpolyneuropathy.org/u/R_Johnson)\ **Post date:** [June 8, 2013, 1:46am UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-lost-newly-diagnosed-with-cidp/1172/4 "2013-06-08T01:46:41Z")
Hi Rachel, This is scary…I am 30 and was diagnosed about a year after my son was born. You probably have tons of questions. Feel free to ask. I was on Prednisone last Fall and was so thankful to come off of it. It does effect your emotions and your waste line. Advice: eat small portions, work out as much as you can (even if it’s sit ups). Feel free to contact me of you have any questions. 🙂 ---
**Author:** ![Yellowmeema](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/yellowmeema/32/863_2.png) [@Yellowmeema](https://forum.livingwithpolyneuropathy.org/u/Yellowmeema)\ **Post date:** [August 21, 2014, 9:46pm UTC](https://forum.livingwithpolyneuropathy.org/t/feeling-lost-newly-diagnosed-with-cidp/1172/5 "2014-08-21T21:46:11Z")
I'm sorry that you are going through this. I'm a lot older than you (just turned 50) and I know how awful it has been for me to lose the ability to care for and do things by myself. You are having the same feelings I have....I don't know what to do either...and until I found this website I felt like NO ONE understood what I was going through. I will pray for you.