• May 7, 2019 at 3:50 pm

      Was on 60 mil of oxycodone for three months since initial GBS diagnosis on 11/18.
      Used kratom as a replacement, took the edge off the pain and caused sleep.

      The pain was worse side effect for me. My one foot felt like it was in a block of ice.

      After 5 months noticed I was improving on my own. Just compleated 5 days of gamaplex infusion.

    • July 20, 2019 at 11:26 pm

      Boy it is hard to reply on here. I didn’t have anything like IVIG or PP. They gave me a steroid of some kind. They had to call in another neurologist because they didn’t know what it was. They even did another operation to see if they goofed up. I would not stop screaming in pain and could not move. I don’t remember the first month, they had me on so much pain medication. It took forever to get me to move my legs on the parallel bars and it was one foot by inches for days and on and on. I went home still paralyzed. I never heard of Kratom, the stuff I am on now and being taken off is very additive. and the government says all people but cancer patients are to be off of it(Fentenal). They never tried to give me any IVIG or the PP. No one seems to know how to take care of GBS patients around here. Green Bay, Wisconsin is big enough, you would think. I am slowly going back from what I had gained. I use 2 canes and can walk but not real good. I refuse to go into a wheel chair completely. I am allergic to so much medication and can’t tolerate many others. Hope you continue to improve with the gamaplex infusions as you said.

    • July 21, 2019 at 12:48 pm

      It looks like kratom is illegal in WI, sorry. I’m managing with low doses of lyrica. I developed a tolerance to the kratom. There is actually a store up the street that sells kratom here in la mesa, Ca. Even though in nearby san diego it is illegal. Eight months into my illness I just started walking without a walker for a little bit. I’m hoping I have GBS instead of CIDP. I did get the disease right after a very nasty flu. Supposedly CIDP does not happen that way. I’ll keep my fingers crossed. Im 64 years old. If I had to pick an age to get this disease, 64 is a good one.
      Retired, couch potato, reclusive etc. I think positive mental attitude is our only defense. I still get major depressed.

    • July 21, 2019 at 2:07 pm

      Judy –

      I forgot to mention the gammaplex IVIG made me worse. Wish I had never taken it.