Reply To: Questions about Diagnosis

February 1, 2019 at 6:17 pm

Hi, Emily.

I’m happy to share with you my personal experience as well as what I’ve learned. First off, about 40% of people told that they have CIDP are probably misdiagnosed. There are several factors which–when combined–lead to a proper CIDP diagnosis. Those include tingling, weakness and/or numbness in the limbs as well as unusual protein levels (as from a spinal tap), difficulty walking, balance issues, and finally subnormal readings on an EMG/nerve conduction test.

In my case, my EMG test was considered “subnormal” by one doctor and “normal” by another. It turns out that I was receiving IVIG for an immune deficiency, and those infusions were normalizing my EMG test results. When I waited a few weeks before another EMG test, it suddenly became conclusive that I had CIDP.

As you can see, it’s quite complicated, so I’d recommend that you see a genuine expert in your area to make sure that you really get diagnosed properly.

Good luck!