Looks like I screwed up the first attempt so here is another try.
Hi! I am a CIDP patient in remission (hopefully permanently). In the Spring of 2013, my legs started getting weak and then I started to fall down, which put me in the emergency ward. In the hospital they diagnosed me with CIDP, gave me IVIG, kept me for 5 days and then sent me to hospital rehab for 3 weeks. Both my legs and my arms were quite numb and tingly. After rehab, I was sent home with no follow-on CIDP meds and have had none since. Progress at home (walking, stair climbing, getting out of chairs, etc) was quite slow and depressing. Then after about 2-3 weeks, there was a rapid change and things started improving much faster (don't know the reason for this). My arms and hands got back to about 98% recovery but the legs were a little slower, but I can now walk 2 miles, climb 100 stairs and have removed all the "blocks" we used to raised the chairs so I could get out of them. I can pretty much do everything I did before the onset, only at a slower speed! Where I was really lucky was that during this entire time I had ZERO-NO pain, just tiredness in my legs. Looking at the discussions, I know I got off easy and have this little black cloud over my head called "possible relapse". I was hoping I could get some insight into that possibility but looking at the discussions it seems it is very patient specific, with no real guidelines. I go to the gym to strengthen my arms, shoulders to help the legs (which don't seem to improve too much with the gym work)-- anyway, I'll be happy if I can just stay where I am at now. Glad I found this site, a wealth of information!
Welcome Bob. I am so happy for you. I would be basking in your silver lining. No one knows what the future holds, even those who don't have cidp. It really can go away without occurrence.
Deart Mabes, thank you for your kind words--I guess we all have to live with uncertainty.
Bob
mabes said:
Welcome Bob. I am so happy for you. I would be basking in your silver lining. No one knows what the future holds, even those who don't have cidp. It really can go away without occurrence.
Welcome and thanks for your post - I will say you were lucky are far as no pain that is a major silver lining and your progress at home seems to be going well - trust me I understand it is not even close to fast enough this I understand. I spent 4 months between a skilled nursing facility and an intense rehab facility and it still took me another 5 months to walk again. But today almost 3 yrs later I am able to live on my own again - I do have mobility issues and have had to use either a walker or a cane all the time but I am trying avoid any more broken bones (I have had 3 in the last 2 yrs I fractured my upper right arm toward my shoulder in Jan 2012 and I broke my right lower leg in 3 places in Jan 2014 & I was just standing there in front of my sink about to wash my hands. I never got that far and so far my doctors have been unable to tell me why my bones keep breaking. Is it something related to my CIDP? or something else.
To me the most important is to find a doctor you like and trust - A neurologist would be a good start unless they have referred you to one already. Good Luck