I know i'm responding to an old post, but am looking for fellow CIDP'ers. I have recently been diagnosed and going through IVIG treatments. I have had 3 so far (first one being a double does over 2 days). I have not seen many support groups around this disease.
I was diagnosed in March 2024, and although through out the fall I had minor symtoms, I had no idea what was going on. Just slowly started to lose strength. I couldn't life baking pans, legs started getting shaky, writing was difficult. By February, I was unable to climb stairs, stand up from a sitting position, use my hands in any useful way, and very very unsteady on my feet. It progressed so rapidly I spent about a month needing a wheelchair for any outside walking or activities.
Luckily I was hospitalized and the neurologist who saw me was able to easily diagnose me. I feel very fortunate for this as no other doctor could figure out what was wrong with me. All of my tests came back normal! I have read it could take years to be diangosed, so I am so thankful that this neurologist crossed paths with me.
The treatsments seem to be working in that I can walk much steadier, and able to climb stairs with the help of a handrail. I do get headaches on a regular basis following my infusions, and try to drink a ton of water to combat this.
Not to be dramatic, but this is life changing. All plans work around 3 week infusions, side effects, and feeling yucky after them. I know I should be thankful that I can function independenly once again, but sometimes just get caught up in the "sorry me" state. I would love to hear from others, and how you handle the physical and emotional/mental part of this disease.

Jump to this post