if a treatment works

    • Anonymous
      April 1, 2008 at 10:17 am

      I am wondering. I had IVIG in the beginning. I did the loading dose of five days, which turned into four b/c I got the mennigitis headache. The next time I did the five days at a different hospital with a nurse who wasnt in a hurry to get me out of there. What a difference that made. After the five day, I’d go each mo for 1 day. My dr told me there was no improvement with the EMG. I didnt feel any better. I’d break out with a terrible rash after the IVIG so we stopped the IVIG.
      I did the steroids with the same results but no rash. The EMG after that showed some worsening and some very very slight better. He told me there was a chance things had burned themselves out. Or I was just very slow to progress and basically released me.
      I have since done some physical therapy and got an AFO. I go back today b/c of noticeable changes and worsening.

      Some have gotten better with treatment …from wheelchairs to walking. I am wondering about the paralysis and numbness in the feet and toes. For those that IVIG or plasma exchange or steroids helps you, does it bring back movement to your toes ? Does it ever really get all the way better or once damaged, it’s permanent and the treatment is to keep things from getting worse ?

      I always appreciate everyones input.

      best wishes.

    • April 1, 2008 at 10:34 am

      One day a month as a maint. is not going to cut it! No wonder you saw no difference. Kevin’s case is less severe than yours, and he gets a LOADING DOSE every month! IVIG only has a 42 day full life at best, so if you are getting one day a month, that is less than a quarter of what you should get. Ask if you could do the loading dose, and the maybe do a couple or a few months of those to REALLY guage improvement and then start spreading them out. What ever the doc and you decide, be it every two weeks at 1g/kg or every two weeks 2g/kg or stay on the monthly.

      I know you hated the steroids, so stay firm with that. I personally think it is better to do one drug at a time and guage its effectiveness before you introduce another.

      Another tool besides the ncv/emg we found helpful was a grip test from PT. It tells you exactly the pounds of pressure your hands can do before ivig, and then we would measure after, then again in two weeks, and so on. GOOD LUCK! WE WIL PRAY THAT THINGS GO WELL AT THE DOC!

    • Anonymous
      April 1, 2008 at 11:18 am

      It depends on the extent of your damage if you’ll get better & how fast that will happen.

      Have you tried plasmapheresis or other drugs like Cellcept or Methotrexate? I hate even suggesting them but getting a bad rash from IVIG isn’t pleasant & who knows if the reaction could progress into something worse.

      Did they try giving you a dose of solumedrol before getting the IVIG? That should help with any potential side effects.


    • Anonymous
      April 1, 2008 at 12:28 pm


      The information I got from my neuro was that muscle losses could return easier than sensory losses.

      In my case, he indicated that the axons were not functioning, and the “message” would not make it from point A to point B. My sensory losses seem to be permanent.

      Many people have indicated some reovery in the muscular area. You can deal with numbness if you have movement!!

      Good Luck

      Dick S

    • Anonymous
      April 2, 2008 at 8:09 am

      Dick, I agree. If only I had movement !