Dorsiflexion Muscle loss?

    • Anonymous
      May 14, 2011 at 11:07 am

      I’m sure plenty of you have this as well. I am on IVIG 1 time every other week and 60mg of Prednisone daily. Has anyone had this strength come back from the IVIG? I’ve only had my loading dose so far, but my biggest weakness is in the dorsiflexion or being able to stand on my toes. All my weakness is from kneecaps down and I really want this IVIG to work, but I don’t know how long it’s suppose to take or if it’s even possible to give me that strength back. Any opinions?


    • Anonymous
      May 15, 2011 at 9:13 am

      Every case is different, and I do not know the extent of the damage CIDP has already caused, but you have every right to hope that you should be able to recover some , if not most of your previous muscular ability. In time.

      Don’t expect miracles, it won’t happen overnight. It takes time for damaged tissue to “repair”. I am sure that many others can tell you their stories of recovery after IVIG better than I.

    • Anonymous
      May 15, 2011 at 10:45 am

      After my first 5 day loading dose I had an immediate improvement. Unfortunately it was short lived and did not maintain itself on what I call my 5 months of under treatment.

      Since that time I would describe any improvement as taking place over months. Not weeks, months. In my case, due to the severity of nerve damage in some places, no improvement is expected in those places.

      time, give it time. Lots of time.

    • Anonymous
      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.


    • Anonymous
      June 25, 2011 at 10:58 pm

      It took over a year before I got dorsiflexion back, and that was with daily stretching and exercises. It’s still less than normal, and right now when I walk the doriflexion causes cramps in my peroneals. But it did come back.