From GBS to CIDP to NF155: A Bumpy Road to Diagnosis
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- Опубліковано 29 сер 2024
- To learn more about GBS and CIDP, please go to:
www.gbscidp.ca/
/ gbs_cidpfoundationofca...
/ gbscidpcanada
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#autoimmunedisease
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#peripheralneuropathy
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.
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.
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.
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.
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.
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).
I am also demyelinating polyneuropathy secondary axonopathy patient... I have no idea...