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.
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
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.
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.
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.
