I had progressing CIDP for about a year. Test after test was performed until they finally hospitalized me for an IVIG loading dose. While I was in the hospital, I had a GBS attack which caused me to be intubated for 6 days. It’s been a couple years now and I still get IVIG every three weeks. It’s like a roller coaster of progressive numbness and recovery, every three weeks. My toes are completely paralyzed, but other than that, I’ve learned to live with it pretty well. Thanks for sharing.
The toes and feet are the worst. It sucks that you're not stable with the IVIG dosing. Ideally ,the IVIG keeps you stable for the entire 3 weeks allowing the body to try and heal itself. I'd push for maybe more frequent IVIG - every 2 weeks vs every 3 weeks to try and get your symptoms to stabilize. Wishing you luck and recovery. This disease sucks so much.
I know. I went to multiple ER's and still didn't get a diagnosis until I got to see a neurologist. I was lucky, as it only took me a few weeks. Good luck with your treatment.
Thank you for the time and info. I have a granddaughter who was dx'd with CIDP. She just turned 5. Yjis is not an easy row to hoe for her. Thanks for the breakdown and explanation.
She's young. With proper treatment hopefully she will live a relatively normal life (other than the infusions). Hopefully it will also go into remission. I pray someday for a cure.
I had progressing CIDP for about a year. Test after test was performed until they finally hospitalized me for an IVIG loading dose. While I was in the hospital, I had a GBS attack which caused me to be intubated for 6 days. It’s been a couple years now and I still get IVIG every three weeks. It’s like a roller coaster of progressive numbness and recovery, every three weeks. My toes are completely paralyzed, but other than that, I’ve learned to live with it pretty well. Thanks for sharing.
The toes and feet are the worst. It sucks that you're not stable with the IVIG dosing. Ideally ,the IVIG keeps you stable for the entire 3 weeks allowing the body to try and heal itself. I'd push for maybe more frequent IVIG - every 2 weeks vs every 3 weeks to try and get your symptoms to stabilize. Wishing you luck and recovery. This disease sucks so much.
diagnosed with CIDP in 2021 after a 2 month hospital stay and misdiagnoses. getting the correct diagnosis was a game changer
I know. I went to multiple ER's and still didn't get a diagnosis until I got to see a neurologist. I was lucky, as it only took me a few weeks. Good luck with your treatment.
Thank you!!
You're welcome!
Thank you for your video. ❤
Hey Holly.. thanks so much !!
Thank you for the time and info. I have a granddaughter who was dx'd with CIDP. She just turned 5. Yjis is not an easy row to hoe for her. Thanks for the breakdown and explanation.
She's young. With proper treatment hopefully she will live a relatively normal life (other than the infusions). Hopefully it will also go into remission. I pray someday for a cure.