I'm doing well (so far) and wanted to share my story to-date as hope for anyone newer than me around here.
My symptoms began probably 11-12 weeks ago with numbness and pins-and-needles in my hands and feet. I went to my primary care doctor about 7-10 days into the symptoms. My B12 level was severely low (183) as well as my D. These symptoms can be attributed to low B12, so I received shots and am now on supplements. But as the weeks continued on my symptoms got worse. So the low B12 is still unexplained.
Over the course of weeks the symptoms slowly progressed. I was referred to a neuro and a nerve conduction study was ordered. Results were consistent with CIDP. A lumbar puncture was ordered. Results were consistent with CIDP (protein level 187). Diagnosis confirmed, CIDP. This was about 7 weeks into my symptoms.
I was at my worst the day before treatments began, which makes sense. At my worst my hands and feet had a lot of numbness and pins-and-needles. My heels and toe tips and finger tips the worst. Numb forearms, and legs up to the knees. My ankles rolled a lot. Running/jogging was impossible. Walking was tough but doable. Very wobbly. But I could function. I could see what would be coming down the line if not treated.
Insurance and scheduling took a week or so. But around week 9-10 I started my IVIG treatments. In home. Gammagard. 150 grams over 5 days (30 grams / day). There was a 1 day break in between the 4th and 5th treatment due to high blood pressure (146/104).
My only side effect was high blood pressure (if even related), and a severe headache on the morning of the 4th day. There is also flushing in my face, but I'll post on that separately.
Now the good news for me, and hope for others. This may all be in my head. But within hours of my first treatment, as I was typing, I could occasionally feel cold sensation on my fingers. By day 2 I could feel more temperature in my hands, and on the bottom of my feet. By day 3 I could move noticeably better and was able to gently jog for 30 feet or so. Climbing stairs was easy.
Five days after treatment ended I was playing tennis! I can quickly move, but cannot sprint. But I can move fast enough and with enough confidence that I can safely exercise.
Based on what I've read on this forum I know that my diagnosis was relatively fast, and my symptoms never got quite as bad as most (probably because of the quick dx and treatment).
I just wanted to share that, for me at least, IVIG has gotten me 80-90% back to pre-CIDP in just about a week.
I'm hopeful for my outlook long-term. But I'm also cautious. I know relapses happen. And for me I don't know if that is in 2 weeks, or in 2 years.
Now if the weather would just improve so I can actually get outside to use these legs!