A friend needs help!

    • Anonymous
      November 5, 2012 at 5:55 pm

      I need  help, please.  I have a friend who has been told he has the axonal form of GBS.  He started having leg weakness the end of August. Went to the hosptial and paralysis proceeded rapidly to entire body. They said he had CIDP. He received IVIG there.  He went to Mayo, where he was placed on a ventilator, and had PE.  They were very vague about a diagnosis and ultimately said they’d done all they could and that it was a wait and see for recovery.  He and his wife chose to come back to the first hospital in his home state to recover and he is now in an acute care hospital.  One doctor told him he would never get off the vent and that the disease will kill him.  Now a different doctor says they can try “one last treatment” that possibly can get him off the vent, but that’s all…no reversal on the paralysis, which is still head to toe.  This treatment is Cytoxan.  So basically what I’m asking if for any advice, help, whatsoever…..quickly.  Is this as hopeless as it sounds?  I know I didn’t go into great detail.  I live on the other side of our large state from the hospital where he’s at.  His wife isn’t very computer savvy, so I told her I would find out whatever I could.  Thanks so much.

    • GH
      November 5, 2012 at 8:25 pm

      How many plasm exchange treatments did he receive? I had nine, and didn’t start recovery until they were almost finished. How much time has elapsed since the PE treatments were finished?

      How was it decided that it is CIDP instead of GBS? It is usually GBS patients who need a ventilator.

    • Anonymous
      November 6, 2012 at 4:59 am

      GH,  He only had one PE at Mayo.  It’s probably been 4 or 5 weeks since he had that.  I thought CIDP was the most common form of GBS.  I’m not sure how they ultimately came up with their diagnosis, either at his home state hospital, or Mayo.  When they left Mayo, the wife was told to consider what he had was a really severe form of GBS.  They never mentioned the word “axonal” to her, but now this latest doctor called Mayo, and they said it was an axonal form all along, and now the home state doctors are saying the same thing.  Any info or advice would be greatly appreciated.  Thanks.

    • GH
      November 6, 2012 at 1:48 pm

      CIDP is now considered a separate condition from GBS. The distinction can be difficult to make in some cases.

      I don’t see the point of doing only one PE treatment. If you are going to get a catheter installed for it, you might as well get some use out of it. A single treatment is not 100% efficient, so multiple treatments reduces the fraction that is left after earlier treatments. It seems like cost-cutting to me. Much treatment is based on what insurance is available and what it will cover.

      I don’t know anything about an “axonal type” of GBS. There is always demyelination, and in severe cases there can be some axonal damage as well. I have CIDP (but similar to GBS) and have axonal nerve damage in my legs. Despite that, I have made a good recovery and can now walk without assistive devices (but not 100%).

      This is a sad story. The only advice I can give (not being a doctor) is to find the best neurologist available and get another opinion. Generally, earlier treatment leads to a better recovery, and it is already late. My feeling is that my PE treatments were crucial to my good recovery, but I don’t know whether they would help if done much later.

      If there is axonal nerve damage (I expect they know that), recovery will be very slow and likely incomplete. As for the ventilator, I have no experience with that. But I have read of severe GBS cases in which a person was in that state for a long time, then eventually recovering. You should always hope for improvement and seek the best treatment you can get, because three months is a short time for this disease.

      My thoughts are with you. Try to keep up hope.

    • Anonymous
      November 7, 2012 at 3:05 am

      my husband was on vent for over 5 months and was totally  paralyzed and was told the same thing, but is now off vent, still has trach but breathing with oxygen , he is moving arms. he had cytoxan twice and rituxin once.  from everything I read and heard from other people i think it is too soon for a doctor to say your friend will never be off vent. i don’t know if the cytoxan helped my husband or things just started coming back on their own. The one thing I do know is question everything,doctors tell you.  question everything….’






    • Anonymous
      November 8, 2012 at 5:14 pm

      Thanks so much for replying! I need to make a correction to my first post….I said he was told he had CIDP….I meant AIDP.

      GH, I wish I had found this site, and you, sooner.  But you do give hope.  Thanks.

      DML, I’m so happy for your husband and you.  I wish him continued recovery.  As soon as I get done here, I’m calling my friend and sharing your and GH’s posts.  Thank you.

      I know I’ll have more questions for both of you.