Dad is progressing!!!!

    • Anonymous
      December 11, 2007 at 6:56 pm

      Well an update on my dad. The doctors took him off the steroids on Tuesday Nov 27th and started him on IVIG the next day until last night he had his last dose. Well on Friday the doctors went in and asked him if he could move certain parts of his body and he would try. They asked him if he could move his shoulders and he did, exciting!!!! We haven’t seen him do that since he first was put on the floor after having the Plasma Pheresis. Well, what do you think about this? My sister said that the therapist that used to go and visit him before he was put into ICU asked him everytime he went to visit if he could move his shoulders and that he told her the reason he asked that was because that was a first sign of recovery. Well I didn’t know if that was true or not. If anyone knows any truth or facts about this please tell me. Also, he has started moving his hands more and now they are going to continue to give him a dose of the IVIG once a week for a little while since they are seeing progress with this, but the neurologist said that what he has is CIDP rather than the GBS is that something that is very different or do they have a lot in common? Any feedback will help greatly!!!!



    • Anonymous
      December 11, 2007 at 9:18 pm


      cidp is chronic gbs. it’s the same animal, but it keeps on giving. my heart always goes out to folks w cidp. he may need ivig on a scheduled basis for the rest of his life. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 13, 2007 at 10:34 am

      Hello Sabina,
      I have severe CIDP and that probably happened because I was mis-diagnosed and almost a year of UNTREATED progression ran through me before treatments were started.

      YES, I am in a wheelchair, but it makes me so much more mobile then trying to walk with a walker so I take it as a blessing! You should see me speed up/down the store aisles and the mall.

      CIDP can be life long treatments, but believe me, you learn how to live with it. I am a healthy person except for this syndrome.

      You lose your “old self”, but your “new self” takes over and you learn how to do your things in a different way.

      Doctors will set up a schedule of IVIG’s in the way that they think is best. If your dad shows signs of doing well and then he’s not doing well when they are stopped, then he needs a maintenance schedule. I prefer to find out what you do well with by starting out with the IVIG’s close together, then space them out to once a month, or longer.

    • Anonymous
      December 16, 2007 at 4:25 pm


      That is wonderful news. What a great Christmas present that will be to have him getting better. Take care.


    • Anonymous
      December 20, 2007 at 1:15 pm

      So happy to hear of your dad’s improvement!!! Have a fantastic holiday season!!!!

      Peace, Dave

    • Anonymous
      December 31, 2007 at 1:51 pm

      An update on my dad. He was taken off the ventilator completely as of Saturday Dec 22nd. So, that was the biggest and best Christmas present that I received!!! We talked to the doctor Friday Dec 28th and he said that my dad is doing very well off of the ventilator although he still has the oxygen but that’s normal. The next step is to cap off the trache to where he is completely breathing on his own without the oxygen. The doctor is hoping that another EMG test done by the first week of January then they will be able to determine if he has had more improvement on his muscles since the last one that was done after Thanksgiving, fingers crossed. We as the family see an improvement but I know only a professional with an actual test can tell. After the EMG is done then they will speak with the social worker about the next step which is getting him into a facility to start physical therapy. The positive side of all this is that the doctor said as long as he is in the VA hospital and not able to move to push a call button that he will continue to stay in ICU rather than being moved to another floor because he needs 24 hour monitoring. We felt good about that after everything that we had experienced with the nurses on the 6th floor that he was on before he went into cardiac arrest. He is still getting a dose of the IVIG every Monday, but God willing he is on his way to recovery stronger now than ever. I thank all of you for your support and prayers and just keep us in your prayers because I know that God is performing Miracles for him on a daily basis. I will keep you posted and thanks again.




    • Anonymous
      December 31, 2007 at 8:44 pm

      Sabrina, that is great news ! Happy New Year !