Dee Costa, people often have fatigue and headaches after treatment. For my maintenance doses, the headache often appears about ~4-5 days after treatment. I don’t think a loading dose of IVIG would offer immediate relief of neuro symptoms and I don’t think it would cause them as a side effect either. Your husband should rest and let his body process all of that IVIG. It’s a big strain on the immune system. My neuro asked me to commit to 6 months of IVIG before trying to determine if it is working or not. There will be ups and downs, but it’s the overall long-term progress that’s important. I wouldn’t take his walking difficulties now as a sign that he will always have problems or that the treatment isn’t working. You’ll need more time and treatments to determine that. Best of luck.

Try American Red Cross, Unyts, Somerset Labs.

Are you aware that the Medical Advisory Board of this Foundation has identified “Centers of Excellence” with doctors that have expertise in CIDP? You’re lucky that there’s one in Philadelphia: Perelman School of Medicine at The University of Pennsylvania. Here’s the link: https://www.gbs-cidp.org/gbs_cfe/university-pennsylvania/

I hope you were able to see a great neuro and get things straightened out.

You mention numbness in your limbs, burning in your feet and cobwebs everywhere. I’d ask about an EMG. I’ve also heard of docs doing EMGs on the face, although that sounds rather unpleasant!

I know a lot of people are on ongoing oral steroids and monthly IV steroids. I’ve only heard the limit of 3 times a year related to something like a back injection. This forum is rather small, perhaps you could also post on one of the Facebook forums with 1000s of members and see what they say?

If your financial situation allows, it may be worth it to self-pay to see a second opinion neurologist, ideally one affiliated with a “Center of Excellence” designation with this foundation.

I’m sorry you are going through this, but glad to hear that your neurologist is accessible and responsive to you. Have you had an EMG yet? My understanding is that is one of the primary tests to diagnose CIDP. (although to your point, you can have the disease without abnormal testing). Do you live in the US? If so, you may find it difficult to be approved for IVIG without meeting your insurance company’s criteria. But if your doctor is skilled in peer-to-peer medical reviews, that can be overcome.

I was diagnosed with an atypical case of CIDP and my neuro looked at IVIG as therapeutic but also partially diagnostic. (ie if I responded to IVIG positively, we may be on the right track). His take was that IVIG is safe and harmless and worth a try, although one could argue that the side effects can be significant and the costs (financially, infusion time, downtime) are not to be overlooked.

Some CIDP patients take steroids successfully without IVIG. Are you back on steroids? My doc was anti-steroids for me and I haven’t had them — only IVIG. (Infused today in fact).

If you think IVIG is a good possibility, I’d get the ball rolling. It can take a few weeks to get set up (unless your case is emergent and then you can go to the ER, get admitted and be infused inpatient). While you’re waiting for that, you can further investigate your options. Best of luck!

Welcome to the group and best of luck with your journey. Everyone’s symptoms and progression are different, so try not to dwell too much on the bad outcomes. Some people improve or stabilize with treatment. And I’ve read that ~30% of people go into lifetime remission after 6 months of IVIG. In the meantime, do what you can to be as healthy as possible. Diet, exercise, sleep. And ask your neuro about PT for balance issues — there are exercises you can do to improve some aspects of balance. You can’t exercise away the sensory deficiencies, but you can strengthen stabilizing muscles and work on your vestibular system.