spreading to my arms

    • Anonymous
      August 7, 2008 at 7:47 am

      I noticed last night that I cannot feel my forearms when I pinch them. Cant feel the tops of my hands or fingers when pinched either but that’s been going on a while. It’s all the way to my elbow on the top of my arms, not so much on the bottom. I dont know when this started and strangely, I can still type and use my hands, thank goodness.
      I dont understand this stuff at all…is this typical progression and should I be worried ?????
      Should be finally getting the IVIG Friday if the bloodwork comes back in time.
      The nurse told me I’ll start off small and if tolerated , it will be increased and possibley five days in a row.

      I was rather scared last night and when I showed my husband, he looked like he could cry. I hate to worry him so I dont tell him stuff…but, he IS my best friend and I want to tell him everthing. ug.

      I guess now I can say I am numb from the elbows and knees down. Not alot of tingling…not always pain. When there is pain, it makes up for the times there is none.

      I count my blessings today. I know I am fortunate.

      Happy Thursday everyone.
      it’s a beautiful morning in Omaha.


    • Anonymous
      August 7, 2008 at 8:31 am

      Hi Stacey! I too am getting the arm problems but mint actually burn like fire. The carpul tunnel nerve is acting up in both arms. I have to type with one hand now because this problem started a while back ago. And I am left handed. The one arm that is causing me more problems that the right.
      I’m like you! From the knees down, no feeling and from the hands up to the shoulders I have that feeling.
      The nerve damage is even in my behind area. Everytime I get a needle in the fanny for something, I don’t even feel the needle going in. I’m eat up with this mess. Just not getting treated yet until they find out the cause, if…. they ever do. Hope the IVIG works for you. I am praying they start me on it! And soon!

    • Anonymous
      August 7, 2008 at 10:39 am

      A bit of tough love…

      It sounds like you are progressing. You need to get your dr to stop messing around & get you on a high dose IVIG schedule to stop this!

      I’ve put my health off for the last few years because of Emily’s illness. Someone recently said to me “If this was happening to Emily would you wait?” I, of course, said that I would not wait & would be at the dr’s office first thing in the morning. The person then said “Then why aren’t you doing it for yourself? If you are sick then you can’t be a good mom to Emily & in the end it hurts her”.

      Perspective. That’s what it is.

      I know if this was happening with Connor you would be busting down doors to dr’s offices. So you need to do it for yourself. Get that dr to stop messing around! You need treatment! I don’t normally suggest plasmapheresis but honestly, at this point, you might need it. Then you can start on IVIG.

      You need to do something. NOW!

      I’m saying this because I care & I don’t want to see you suffer or get worse.

      Good luck,

    • Anonymous
      August 7, 2008 at 11:12 am

      I am with Emily’s mom. You need to started on some sort of treatment so you can stop the progression before it is too late.
      You have been taking care of everyone else but not yourself and your health is suffering. Please get started on some sort of treatment.

    • Anonymous
      August 7, 2008 at 2:37 pm


      Remember that CIDP is a demyelinating polyneuropathy. The immune system attacks the myelin shaeth and damages the ability for the signals to be properly transmitted to the spinal cord, and then to the brain for processing.

      Any demyelination along the “highway system” will result in problems. Each nerve pathway is its own pathway. For example, you have your own highway from your house to work, no other cars. That is what your nerve system is like. So it makes sense that the longest transmission lines, which are your hands and feet, will have the greatest opportunity for failure.

      So I guess it is not unexpected. BUT, when you have a treatment session, the treatment should slow or stop the progression and give the Schwann cells the opportunity to help repair those damages areas.

      Like the others have said, you need to get to your neuro for whatever treatment has been working for you. The sooner a treatment gets started, the sooner recovery can begin.

      Take care

    • Anonymous
      August 8, 2008 at 6:54 am

      thanks guys,

      I am getting treatment this afternoon. we’ll see what happens. I am walking worse and having pain issues on the bottom of my feet.

      I know this first dose isnt going to be my miracle fix…but, I think I’ll still hope for it.
      Ivig did not make me “better” in the past….but it did keep me stable.

      happy Friday,

    • Anonymous
      August 8, 2008 at 11:26 am

      Stacey, just want ot wish you well and tell you I am thinking about you. Hang in there. Huge hug!

    • Anonymous
      August 10, 2008 at 1:58 am

      Stacey –

      Just checking in to see if the IVIG treatment on Friday did anything for you. I hope you are feeling better soon.