Reply To: Diagnosed at 12, Treated 20 years later, need help

March 7, 2014 at 6:14 pm

I also encourage you to go to a Center of Excellence.

Specifically, you need to find a neuromuscular specialist. A run-of-the-mill neurologist does not meet this criteria. How did GH put it? “…experienced with acquired peripheral neuropathies generally.”

In some cases, the nerve and muscle testing will neither rule in nor rule out CIDP. However, when the IVIG is effective there will be noticeable physical improvements, usually within 1-3 weeks, which may not last. EMG and Nerve conduction (NCV) velocity values may not immediately improve.

Consider this: “IVIg has been introduced as the main therapy for CIDP over the last two decades. Multiple well-controlled studies have demonstrated that approximately 50–70% of patients respond to IVIg.”

So, the conclusion could be drawn that 30-50% of patients do not respond to IVIG. You can read lots more simply by searching “cidp does not respond to ivig”

For example-

You say you’ve had infusions for 7 months. How much IVIG and how often can make a difference in treatment outcomes.

I’ve heard (or read) about people getting IVIG every week to maintain status quo and prevent progressive losses.

I have not heard of vision problems with IVIG. If this only happens during or shortly after infusion be sure to check with your doctor and the Infusion center about the infusion rate prescribed for you. Huh? Some, less experienced, infusion centers will blast you as fast as possible to get you in out sooner.

Good luck