Reply To: Veins Popping – Ankles Swelling – Hands Contracting

Jamierz68

I had similar symptoms for about 2 years. You should see a good occupational therapist. I slept with custom hand and wrist splints for over a year. Otherwise at night when asleep your hands curl up. With weakened wrist extensor muscles (wrist drop) the flexor muscles take over. If the muscles remain flexed for too long they can be difficult to return to normal length.
Physical and occupational therapy are huge parts of cidp recovery. Not just while there, I would do my exercises multiple times a day. I went from barely walking with a walker and not being able to eat to near full functionality but it took years of hard work.

Also this is a disease where you need to be your own advocate. My first neurologist while good intentioned thought ivig was enough. after three months i ended up completely unable to walk and couldn’t get in to see him. Needless to say I changed immediately to someone else and have been doing much better ever since. It took me both steroids and immunosuppressants in addition to the ivig but it worked.

Sorry long post but tl;dr

Get a prescription for occupational therapy and physical therapy asap or mechanical contractures can occur. If you’re progressing despite being on ivig let them know immediately.