I am looking for someone that can listen to me and help me sort through some things. Let me start out with something about me, I am 48 years old, I am madly in love with my wife of 25 years and proud of my four kids. I was diagnosed with CIDP back in August of 2001. My symptons are bad although I have been in remition for almost two years. This has left me disabled and incapable of caring for my self. I do not have any close friends to talk to and not that close with my family that I feel I can talk to the openly. All of this a fear has been toomuch on my wife.
Whom ever I find that I can talk to does not have to live near me or even talk. We can E-mail or even better text. It is just sometimes I think it would help to have some one who is in the same sort of position to vent to and work through mine and thier thoughts.
Hi Jeffrey, I just wanted to let you know that I understand what you are going through. Even though I am not married I know that my disabilities have put a huge strain on my kids. I'm 50 yrs old and have 3 boys ages 19, 23, and 25. My 19 year old just moved in with my mom, his grandma so that he can go to college. I live in a small mountain community so the commute would have been to far for him to stay here and attend college. So now I'm adjusting to being alone. I haven't been alone for 27 years!! I know that there is someone on this site that you can connect with. I am a woman and feel that it would be more appropriate for you to connect with another man but I just wanted to reach out to you to tell you that you're not alone.
Hi Jeffrey, we’ve all been there. My husband us a saint, but, I’m also blind and cannot drive either. I live on the tip if a mountain and feel as if I am a prisoner.
I know it is very nice to talk / chat / e-mail with a fellow CIDP patient. If you don’t mind chatting with someone from the Netherlands I would like to contact you.
Mind you, English is my second language, so I make mistakes sometimes.
Hope to hear / read something from you,
I could relate to what you and Topher wrote. It's easy for everyone else to say 'hang in there', but they don't really understand the magnitude of what we deal with. I don't have a confirmed diagnosis of CIDP. Most of the symptoms are consistant, but many are not. I'm waiting for an appt at Mayo. If I don't get it soon, I'll be going to the University of Minnesota Neurology. Something has to be done. I've been without treatment since Oct 23 and whatever is going on is ravaging my arms and legs.
I was diagnosed with CIDP in March this year & became fully paralyzed from my chest down. I was unable to care for myself for about 4 months but finally have some improvement and am able to walk again. I still suffer from severe pain and am unable to run/jump etc.
I am in the same boat... no one to talk to & feel as though no one understands.
I'd be more than happy to chat with you... do you have a Facebook account...???
This sounds like a great place to get information and help - I was diagnosed with CIDP about 8 years ago just found this site and am thankful for it the comments have help me see that I am blessed- also tO see how quickly CIDP can set in or change! I am having some difficulty with insurance company getting azathioprine approved- anyone else experiencing this??
Any one had experience with use of stem cell research in the treatment of CIDP??
I was diagnosed with CIDP in March this year & became fully paralyzed from my chest down. I was unable to care for myself for about 4 months but finally have some improvement and am able to walk again. I still suffer from severe pain and am unable to run/jump etc.
I am in the same boat... no one to talk to & feel as though no one understands.
I'd be more than happy to chat with you... do you have a Facebook account...???
Hi Jeffrey; I find that my biggest foe is depression. I am lucky and don't have any pain. Losing the strength in my leg bothers me a lot. Being a commercial fisherman a lot of what you do depends on how you can stand up. I got off the boat I was working on this summer, now my passion for deer hunting is getting squashed, once again because I can't walk. So naturally I have to fight not to be depressed. My IVIG is losing ground so I am trying to get to see my neuro for a more aggressive drug or something. Anytime you want to vent, this is a good place to do it. Good luck and keep smiling.