The Rare Reality: Jenny's Journey with Recurrent GBS
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- čas přidán 14. 02. 2024
- To learn more about GBS and CIDP, please go to:
www.gbscidp.ca/
/ gbs_cidpfoundationofca...
/ gbscidpcanada
#gbs
#guillainbarre
#guillainbarresyndrome
#gbsawareness
#livingwithgbs
#gbssupport
#gbsrecovery
#gbswarrior
#cidp
#invisibleillness
#autoimmunedisease
#IVIG
#ivigtherapy
#gbscidpfoundation
#gbscidpawareness
#peripheralneuropathy
Its very heartwarming to hear these stories. I was diagnosed with GBS last July 2023. Its been a hard, long journey. My mind races with work to do but my body cant cope. Retraining not to over do it the hardest part😢
You are not alone! Are you connected to a foundation?
I am so sorry this happened to you and that your husband and children had to go through the this. Not having enough friends or family for support is hard. Sometimes, hospital staff has favoritism with patients too, some patients get treated better than others. Some people that I noticed who has great support are those affiliated in Christian churches. They're the one who usually are very good about helping in ways that's needed.
THANK U for your story. My friend had "neuropathy" symptoms last winter. GBS!? He did not go to the doctor. He Rested and took NERVIVE. Gradually seemed to get better and walk. He continued to drink beer. He was an alcoholic.Then in the spring of 2024... His symptoms came back with a vengeance. Ultimately he ended up paralyzed & on a ventilator. Diagnosed with GBS. Maybe if he would have gone last year to a Dr. 😕 Will update...
You are helping me now. I feel seen & less alone I had it for the first time when i was a baby barely 2 year old. Second time was 28. 3rd time is now at 36 Im towards the end i can walk for maybe a block. Difficult & painful doesn't do it justice. It's enough pain to make you question your reality.
I don't know how old you video is I had GBS 91 two times in 92 and one time in 2017. The last about fortunately from start walking out on a cane from the hospital only lasted a month. The previous three times each had a duration of about 4 to 5 months from ICU to walking out the rehab hospital using a walker. Currently live with acute neuropathy pain that has to be controlled with medication otherwise I can't gain mobility to walk without feeding an agony. The arms are quite painful as well but not nearly as bad as the legs and feet. Hope you're doing well. Mentally I'm fine although the pain does have a tendency to wear me out everyday. Best regards, Steve
I'm going home on Friday after 8 weeks in hospital and rehab here in South Acrica. I would love to get in touch with anybody dealing with GBS
Hi my wife is out of hospital after IGIV but she is having neck pain after exercises how she can overcome the pain
My husband is still in skilled nursing after 4 weeks in hospital and 6 weeks in rehab facility with GBS/CIDP. He won't be out for at least another 60 probably. Praying for you
Congrats on your release! I was so excited to go home! What is the best way to connect with you?
Your wife definitely needs to follow up with her neurologist/ doctor with respect to the neck pain.
@@crystalmccalister5747I'm sorry to hear about your husband. Are you connected to a foundation?
Such a travesty that physicians didn't take you seriously...so glad you believed in yourself.
Thank you so much! I hope that my story helps others advocate for themselves and not have to go through the same thing.