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

  Рет қаралды 2,120

GBS-CIDP Canada

GBS-CIDP Canada

Күн бұрын

To learn more about GBS and CIDP, please go to:
www.gbscidp.ca/
/ gbs_cidpfoundationofca...
/ gbscidpcanada
#cidp
#cidpawareness
#livingwithcidp
#cidpsupport
#cidpadvocate
#patientadvocacy
#cidpfamilies
#cidpwarrior
#gbs
#invisibleillness
#autoimmunedisease
#chronicillness
#IVIG
#ivigtherapy
#gbscidpfoundation
#gbscidpawareness
#peripheralneuropathy

Пікірлер: 7
@sbn49ajc98
@sbn49ajc98 5 ай бұрын
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-- Ай бұрын
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 4 ай бұрын
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 4 ай бұрын
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 4 ай бұрын
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 5 ай бұрын
I am also demyelinating polyneuropathy secondary axonopathy patient... I have no idea...
@montrealdublin
@montrealdublin 5 ай бұрын
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).
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