Was started on IVIG

November 9, 2011 at 9:04 am

I was started on IVIG as soon as I was diagnosed. I was told the earlier the treatment, the better chance of remission. I noticed you said you did not have a diagnosis yet – I hope you get a definitive answer soon.

I did not have as much damage as you when I started IVIG. I had a lot of numbness in my legs (knees down) and no strength in my hands. I had horrible full body cramping each night. I did fall down a lot (lack of feeling in the legs and I didn’t always lift my feet off the ground enough – LoL – I became a character in a slap stick comedy!!!) I received a cocktail of meds for the cramping and pain and the IVIG to treat the actual CIDP. It helped me for several years and kept the CIDP at arm’s length – I continued to work, go dancing, do my chores, etc – live my life as I had before.

This sometimes is all someone needs. Unfortunately for me, the IVIG quit working. Tried some other things that did not work, then ended up doing the stem cell transplant as I was running out of options and time (I’m in my 60’s).

I hope you get answers and treatment soon!!!