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CIDP diagnosis

Autoimmune Diseases | Last Active: Feb 7 9:16am | Replies (10)

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@lucy1254

I was in the same condition as you when diagnosed in late 2015.
My doc started me on Hyzentra which originally was infused once a month at the hospital but now I take it weekly at home. Very small needles go in my belly ( sub Q) and it takes 1.5 hours but I am mobile and can move around when infusing. At 2 years I went into remission. I was no longer falling, legs no longer hurt ( still a little numb) but I totally have most feeling back. I’ve climbed pyramids in Egypt, hiked Manchu picchu, been to the Amazon in Ecuador, been to Morocco and the lust goes on. I take all my meds with me ( no airport issues at any country) and compared to falling down my stairs in the dark, falling washing my hair in the shower, and not having any feeling in my legs… I’d say this med is a lifesaver. Ask your doc. Btw my friend was diagnosed with CiDp but her doc would not give her the meds. She became wheelchair bound went into nursing home and has since passed. She was only 62. I’m 70 and just booked 3 weeks in italy and Greece for the fall.

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Replies to "I was in the same condition as you when diagnosed in late 2015. My doc started..."

Wow that's all very encouraging. You are much more ambulatory than me. I'm almost 74. I walk around the house just using the furniture for balance but need a rollator to "go for a walk". I have taken a mobility scooter for travel in airports to go on tours. Everyone is accommodating but I worry that I'll fall. I fell the other day and need a lot of assistance getting up. We are going to Spain in March (planned a year ago) and the tour company is happy for me to bring my GoGo scooter on the bus.

I will continue to advocate for myself. If my local neuro isn't willing to try things with me, or even if he is, I think I will look into going to the Mayo Clinic. This group is very helpful. Thanks