recovery after IVIG

May 16, 2011 at 4:24 pm

I can tell you that I was diagnosed with CIDP Dec. 2009. I had extreme weakness in my arms and legs and drop foot. I can only describe it that I felt like I was slowly getting paralyzed by the day, and this all took place within 1 week.

I was diagnosed by an EMG (actually 2 EMGs. I had gone to a neurologist on a Monday for the EMG and she told me I had GBS, then I went to my current neurologist the next day and she did her own testing). She diagnosed it by how I was presenting and a spinal tap the following day, which showed protein in the fluid.

I had the spinal tap in the hospital and she kept me there for 1 week to have IVIG.

This is where my story is so different then the postings I have been reading here. I couldn’t like my arm above my shoulder and within 3 days of getting the IVIG I was able to more my arms and legs. By the end of the week I was fine.

Then the following month I had a problem with my eye and had to go back into the hospital for another full round of IViG. Again I was much better by the end of the 5th day. Thereafter I was waiting until the symptoms came back and then I would go in for a treatment, which was 70 grams mixed with 1400 ml of sterile water. It takes 8-10 hours to administer.

I would start to feel better about 4-5 days later, which only really lasted about a week before the symptoms started up again. I ended up going back in the hospital as an out patient for less then 23 hours every 17 days. Then Nov. and Dec. 2010 I went in every 2 weeks regardless of my symptoms and before you know it I was feeling normal, without symptoms. After the new year Jan. 2011, I stretch it day by day and now the last time I was able to wait 3 weeks and 4 days.

I can tell when it is getting close before my symtoms become too much. I can left my feet and point my toes to the sky a few days after my treatment, by the time I need my next treatment I can barely lift them off the ground. I cannot take my pants off the pant hanger because I cannot squeeze the clips. My fingers get so weak. With me my toes and fingers are the first to go.

I really believe I am so much different then most patients, because my doctor started me on the treatment so fast and is not afraid to prescribe it when I need it. I have also get my reflexes back at times. They come and go depending on my symptoms. I am able to work and do not need the cane, I am able to walk up and down stairs without a problem and walk without feeling every move I make.

I hope this helps.