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Living with Polyneuropathy CIDP, GBS, & CMT

Feeling sad and scared


#1

I’m going to see my doctor tomorrow. My condition has deteriorated so much since the last time I saw him. I am using a walker now. My legs are numb from the knees down. Probably could be in a wheelchair. I think the 1st round of ivig didn’t do much and he’s probably going to send me to have another round. The hospital is 2-3 hours away from my home which was ok last time because I thought I was going to come out better but this time I know it might not work again. I’m worried I’m going to have the chronic form. I hate not being able to do anything for my family. My youngest son is 21 and had Duchenne muscular dystrophy and I was his primary caregiver. Just feeling so bad, having a real pity party here.first time since this started! Whew!


#2

Nightcap

I'm fairly new to the group, and I know it's been some time since you shared this post, but I was wondering how you were doing? I am hoping you have been on the road to recovery.


#3

Actually getting ready to leave sub-acute rehab on Friday. My diagnosis was changed to CIDP in September. I was admitted to Johns Hopkins in the beginning of October. I was moved to sub-acute right before Christmas. Right now I can walk with a walker or Canadian crutches. I do intend to make a full recovery.
Thank you for asking :slight_smile:
You?


#4

I am so glad to hear you got a correct diagnosis and are headed to full recovery!

When I read your post my heart broke for you. I was young, no marriage or children yet, when first diagnosed. I can't imagine trying to go through those first couple of years of recovery while also worrying about my family. You must be an incredibly strong person.

Life for me is good, I deal with the long term pain and paralysis without too much difficulty these days, and I pretty much do everything I want to do.

I hope your recovery continues, it quick, uneventful and complete. You sound in much better spirits too. Stay positive and be well!