Not Again

    • Anonymous
      May 3, 2007 at 4:30 pm

      My Dad’s neuro came in and told him that his nerve tests indicate cidp. I dont understand how they can come to that conclusion. His last test was when his second bout of GBS started 6 years ago. They dont even know what his nerve damage or loss was after suffering through GBS for 7 months. How can they say that there is active demylenation? I have not been able to speak to the neuro in 2 days. He comes late at night or early in the am. A nurse tried to give my dad a flu shot. Has anyone had GBS or CIDP 2 times and been totally paralized and on a vent for months? Im really needin to find someone who has had a similar experience.

    • Anonymous
      May 3, 2007 at 5:23 pm

      I am sorry your dad is going through a rough time. I have CIDP a mild case. I got it from a flu shot.
      Cidp is like GBS but you still get worse after 8 weeks. With GBS the worse is over after 4 weeks. Thye would do a nerve conducting test I call the zap test to see if his nerve are being damaged more and some people get a Spinal Tap which doesn’t always tell you if the CIDP is active but in some people it does.

      I would avoid a flu shot if he is getting worse until you read more up on it.

      There are others who would be able to answer your question better then I could.

      Keep posting and ask questions.


    • Anonymous
      May 4, 2007 at 11:02 am

      The first time he had GBS it took a month before he had to go on a vent. Then he was fully paralyzed in ICU for 7 months. He could not even blink his eyes. Finally, when he could we would have to go through the alphabet and he would blink when we got to the letter. You can imagine how long it took to spell out things like left leg hurts.He made almost a full recovery with very little nerve damage.The second time he started to get symptoms he was on vacation and we rushed him back to the hospital in Atlanta. They gave him IVIG he got better and they sent him home. Within 4 days symptoms returned he went back in the hospital. A few days later he was on a vent in ICU again. He stayed in there for 5 months then went To Shepherd Spinal Center to be weaned off the vent and have rehab. It was almost 1 year from the time he went in until he got out of Shephard. I waited to get married until he was able to walk me down the isle. And he did. The second time I was trying to get pregnant again and could not until the week he was released.
      I just cant believe this could happen again. He is in there getting IVIG. What if they send him home Sunday and in 4 days he’s worse again?
      Thank you for responding. I am just dying for some feed back. We would never let them give him a flu shot. In fact no one in our entire family will get one. How long after your flu shot did you develop CIDP?

    • Anonymous
      May 4, 2007 at 11:20 am

      All I remember is that after 7 weeks I had a hard time to walk except on my heals and I had a hard to use my hands. I was working and I couldn’t even hold one of the smallest boards in my hands because I had weakness in my arm.
      I went straight to the emergency room and after 7 hours they sent me home and told me they could not find my problem but that it wasn’t a stroke.

      Saw my family DR 2 days later then saw Neurologist about 2 weeks later by then I felt better. Neurologist told me to come back in 3 months. 3 months later while recovering from a necessary breast reduction I saw the Neuro again and he told me I was getting worse and sent me to a bigger city to see a more knowledgeable Neuro.
      Cidp is exactly as DOC David describes it. on a post to Micheal on a post of GBS Versus CIDP [url][/url]


    • Anonymous
      May 4, 2007 at 11:27 am

      Thanks! I will look that up right now. It is amazing to me how everyones onset, progression of symptoms, and rate of recovery is so different. I guess I just have to play the wait and see game.

    • Anonymous
      May 4, 2007 at 12:48 pm

      Jill, why is the nurse trying to give your dad a flu shot, when it is not recommended? no to the flu shot, especially if he is having problems. thats the last thing he needs. cidp can be assumed if he has latencies on his ncv/emg tests. the ivig will help stop any further nerve damage, it won’t cure him, just sorta contains the nerve damage to what is already done. some cidp pts get steriods with the ivig, i think it mainly helps with the inflammation of the nerves.

    • Anonymous
      May 4, 2007 at 1:31 pm

      The nurses I think just go to every room and try to give flu and pnumonia shots. They didnt even bother to read in his chart that he has been dx with GBS. Thank God we caught that one.

      What are latencies? The last time he had a ncv/emg was six years ago before his second year long episone of GBS/CIDP. I don’t understand how they can tell when the damage was caused or it it is actively occuring.

      Nuro wants to start him on Cellcept today.

    • Anonymous
      May 5, 2007 at 12:28 am

      Thats great they want to start him on cellcept early. ncv/emg will show conduction blocks or slowing of the signals, these would mean an abnormal result, which in turn translates to demyelination. they can compare the results from the earlier test to this one and get a close estimate of the % of damage. its all in the reading though. Give your Dad a BIG HUG for me. Take care.