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Living with Polyneuropathy CIDP, GBS, & CMT

New Member - Hello!

Hi, I’m Marcia and my husband was diagnosed with CIDP on 5/31/17 after becoming ill three days after receiving the flu vaccine in January, 2017. It’s been quite a journey trying to get a diagnosis but I am grateful to know what we’re dealing with and hopefully the treatment will help. He was in a VA Hospital for 22 days and was discharged with a diagnosis of pseudo gout! He is currently receiving I.V. steroids but I believe IVIG is what it’s going to take to get him on the road to recovery. The Neuro that I took him to (outside of the VA system) said “no one” wants to pay for IVIG so I see a battle in the future if the IVIG doesn’t work. He was finally diagnosed after I pushed for a lumbar puncture.

I meant to say if the IV steroids don’t work.

Hi my name is Shona from England. My 9 year old daughter was diagnosed with CIDP last October. She was treated with ivig’s which seemed to work within 2 days. However a week later she developed a migraine which was so bad she was on numerous meds after ten days and seeing am ophthalmologist they noticed high pressure so she underwent another emergency lumbar puncture to reduce this. She had ten weeks before she started going downhill again and was decided to give ivig’s again as they were unsure if it was the treatment or condition that caused the high pressure. Again a week later she developed another migraine and had to undergo another lumbar puncture. Again ten weeks later she went downhill. They have now treated her with Iv steroids but this hasn’t been as affective as ivig’s. So we are now at a loss as to what is going to happen next. Back at hospital next week. I hear alot that this seems to have happened after the flu vaccine. My doctors just don’t know anything as it’s so rare and even more so in children. I have even done my own research but it’s the not knowing what’s happening or if she will ever recover the use of her arms and legs again fully. Breaks my heart to see a young fit active girl crumble to not be able to walk, hold things and so much more.
Hope all is well thinking of you all. Here if you need to chat.

Shona

Welcome Marcia!

I’m sorry for the circumstances under which you are here but I hope we can help. I know the topic of IVIG and insurance has come up a lot- you may want to use the search bar to look through existing topics to prepare yourself? It is the magnifying glass in the top right corner. Maybe some of our members can comment on their experiences with getting IVIG covered?

I will be thinking of you and hope your husband recovers under IV steroids.

CG

Hi Shona, I am so sorry to hear about your daughter and I can’t imagine what you are going through. You are not alone in this, we have a number of parents on our site on behalf of their children with CIDP. Check out this discussion here.

Hope this helps :slight_smile:
CG

Thank you yes it’s really helped. I really appreciate your support.

Shona

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HI, Shona. I am so sorry to hear about your daughter. She is much too young to have to deal with this. Thank you for your reply. I will keep your daughter in my prayers. My husband had an I.V. treatment on Monday and he is doing pretty good today. It seems to wear off as the days go on. I’m so glad that I found this group.
Take care,
Marcia

HI, CG. Thank you for welcoming me to the group. We’re taking one day at a time. He seems to be doing better today but then tomorrow could be a bad day. One never knows with this disease. It has been hot/sunny here the past few days and that seems to help his spirits although after a time in the sun it wears him out. We have to fly at the end of the month and I’m hoping sitting on a plane doesn’t bother him too much. Take care,
Marcia

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Hi Marcia

Thank you for getting in touch. Ivig’s worked for Keira-Louise she had high doses over two days and got about 8-10 weeks before we would see her going downhill fast. Just a shame she hot the high pressure and now can’t get it again. Steroids bless are ballooning her and has taken 6+ weeks to fully kick in but she’s not as good as with ivig’s. It’s the not knowing what’s coming next or what Dr’s will do.

Hope your husband feels stronger soon. Thinking of you all. Here if you want to chat anytime.

Take care
Shona