From GBS to CIDP to NF155: A Bumpy Road to Diagnosis

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  • เผยแพร่เมื่อ 23 พ.ย. 2024

ความคิดเห็น • 7

  • @sbn49ajc98
    @sbn49ajc98 8 หลายเดือนก่อน +4

    Good Morning!
    You're following my path, thank you for telling us about your journey. I have been living my nightmare since March 1999, a 25 year plan so to speak. With all my doctor visits, neurologists and therapies I have never heard of NF 155. I Googled it and I still don't know what it is.
    In 1987 my immune system started to nosedive and I got ITP, it was the second of four autoimmune diseases for me. GBS in 1999 with recurrent bouts up to a diagnosis of CIDP in 2017. I will be 75 in June which basically means I've been chronically ill half my life. Today my nurse visits me for IVIg Infusion which comes every 3-4 weeks depending on my progress.
    Best of luck to you, stay strong and literally live today for today. Otherwise you will have constant "noise" inside your head clouding the future.

  • @TEPO--
    @TEPO-- 4 หลายเดือนก่อน

    Thank you so very much, your sharing has been so very helpful. I fully relate.
    You give me tremendous hope.
    I'm hoping to find a suport group.

  • @CheriBomzArt
    @CheriBomzArt 7 หลายเดือนก่อน

    THANK YOU SO MUCH FOR YOUR STORY!!❤ My 72 year old is suffering with GBS. He's still on a ventilator. It's been over a month. I'm Searching for answers.

  • @cletiawilliams1436
    @cletiawilliams1436 7 หลายเดือนก่อน

    I know your story ....same here. I was also pregnant during all this. Have CIDP and now the doctors dont know what i have now. Said i had CIDP and GBS But now tbe neurologist doesnt know now what i have. So i know how you feel ....felt the same. Was a cna for 25 yrs now a single parent and w/c bound.

  • @CheriBomzArt
    @CheriBomzArt 7 หลายเดือนก่อน

    I would like to find someone to talk to my friend with GBS. He's still struggling to talk. And pretty much paralyzed from this illness.

  • @jk_996
    @jk_996 8 หลายเดือนก่อน +1

    I am also demyelinating polyneuropathy secondary axonopathy patient... I have no idea...

  • @montrealdublin
    @montrealdublin 8 หลายเดือนก่อน

    Well done and courage maybe take informations about stem cells treatments it makes miracles, but very expensive except in Panama and Costa Rica (but US doctors).