fightingfordaniel

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  • fightingfordaniel
    June 4, 2018 at 3:38 pm

    Thank You for asking. No, there hasn’t been much change. Its been 6 months now and still no movements. The doctor did give him a second IVIG treatment week before last. It seemed to make him a little more alert for about 2 days, but overall did not do much for him. We are all questioning whether this is GBS or not. Its just been so long and there hasn’t been any real improvements. He is soon going to be discharged to a nursing home, one that accepts ventilator patients. We have been trying to get an expert neurologist to review his case, but not having much luck with that. Hope you are feeling better yourself

    fightingfordaniel
    May 10, 2018 at 3:56 pm

    thank you so much for all the info you provided. I am currently trying to get dr to do another treatment of ivig. I pray Gods blessing upon you and your condition

    fightingfordaniel
    May 1, 2018 at 4:42 pm

    Neurologist considered another treatment but then decided against it. They said they didn’t think it would help

    fightingfordaniel
    April 30, 2018 at 5:29 pm

    thank you JK for your response. neurologist are not 100% sure it is GBS. They diagnosed him as having the AMAN form of GBS. He has only received 1 treatment of plasma exchange and 1 treatment of IVIG. They are telling us they don’t know if he will come out of it.

    fightingfordaniel
    April 30, 2018 at 5:03 pm

    thank you much for responding. His leukemia came on very fast. He was having some nauseia and about a week later came the diagnosis of leukemia. Then after another two weeks the GBS set in. I hope that you contuinue to fully recover from this.

    fightingfordaniel
    January 11, 2018 at 4:16 pm

    Read about President Franklin Roosevelt . He most likely had gbs not polio. He was not given a spinal tap. Sounds a little bit like your case

    fightingfordaniel
    January 11, 2018 at 4:06 pm

    this syndrome seems to cause anxiety and other psychological problems. My stepson has been on ventilator over a month. He cannot speak of course but he can mouth words and often it is something strange or confusing. Just be beside your husband as much as you can and that will help him

    fightingfordaniel
    January 2, 2018 at 4:13 pm

    Hello everyone. Just to update on Daniel….It has been 3 weeks and he is still in acute phase of GBS. No movements except for mouth and very limited head movements. Also doctors are somewhat unsure of officially diagnosing him as having GBS because his cerebral fluid has not been elevated in 3 spinal taps they have done. Onocologist are performing the chemo protocol and basically disregarding the GBS. Can anyone else out there confirm as to whether GBS can occur without elevated cerebral fluid? Any info will be greatly appreciated . Thank you.