Emily’s nurses have told us that IVIG can make her more sensitive to the sun & to make sure we apply a good sunscreen. She’s never had any sun sensitivity issues but it might be one of those cases where for some people it can be a problem. She always wears sunscreen when outdoors during the summer.

Kelly

Emitch – I think your story is a great one & should be shared! I think it’s good to inspire others & let them know that people CAN & DO get better! I think it’s easy to feel hopeless with this disease. When you are in pain, it’s difficult to imagine getting better. I think we need more stories like yours to remind us all, even with CIDP, you can still live a nearly “normal” life. And, it DOES get better!

My daughter was 4 when she was dx’d with CIDP. She’s doing things we were told she probably wouldn’t be able to do. We try to live ours lives as normal as possible. Our motto is “We have CIDP – CIDP does NOT have us”.

Kelly

You need to ask your dr if your MRI’s were done with contrast. You need the contrast to see inflammation.

Emily had cranial nerve inflammation on her 1st brain MRI & the dr said she “lit up like a Christmas tree from the lower lumbar down”. Her 2nd brain MRI showed no inflammation – that was after 8 months of being on an intense IVIG schedule. She still had the inflammation on her spine. She hasn’t had an MRI since.

Diplopia (blurry vision) is common when you have cranial nerve inflammation. You need to find a specialist for your eyes. Just going to any old regular opthamologist isn’t a good idea. The eye dr should dialate your eyes & look for inflammation at the back of the eye.

Kelly

Bny (Kelly) –

Do a Google search (or a search on the old forum) for Dr. Dyck out of Mayo clinic. Ask your dr to either get in touch with him or to listen to his podcast. I think he has the best treatment plans for CIDP.

If your dr won’t listen to you then I think you might want to find another one. It’s YOUR body! You know how you are feeling.

Kelly

Scratch that!

I Googled “forum gbs/cidp” and got the link to the old forum. I was able to log in & post. You can also access your PM’s. Even though Linda M posted the link (it didn’t work for me) I will post one too & maybe that will work.

http://forums.gbs-cidp.org/forums/index.php

I wrote a post saying the forum moved & gave the link…kinda thinking it would be nice to stay on the old forum though because I dislike this one so much.

Kelly

There are only a few variants that have names…Lewis Sumner is the only one I can think of off hand though.

My daughter has a strange variant – it doesn’t have a name. We just call it The Emily, LOL.

She had cranial nerve involvement, right eye paralysis, distal & proximal weakness, what she called strawberries & nuts (thinking neuropathy & charlie horses?), autonomic nervous system involvement, elevated spinal protein levels & a practically normal EMG – showed only very slight demyelination.

Emily responded really well to the IVIG at first too. Within 24 hours of her first infusion she was running down the hospital hallway. We are very fortunate to have a neuro that was willing to give her infusions as her body needed them & not go by standard protocol. I honestly believe that’s why she is as active as she is now.

Emily’s neuro wants to take her off of IVIG to see what will happen but I’m not comfortable with that. We’ve kept her on the same dose, 20 grams per infusion, since she was 4. She’s more than doubled in size since starting & we’ve gone from infusions 2-3 times a week to infusions every 5 weeks. We will go to every 6 weeks this summer. I feel like after we get past 7 weeks then I will feel more comfortable stopping the IVIG. I strongly believe she will be in remission. Emily also believes it. She told me the other day she thinks she will be done with CIDP by the time she’s 13. FINGERS CROSSED!

Kelly