Reply To: No official diagnosis, but doc is convinced. Starting IVIG

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!