AIPD/CIPD & Normal EMG?

Hi, I’m working with a few specialists towards a diagnosis. Chronic muscle myopathies, primarily distal but proximal as well during bad flares, which takes months to resolve. It progresses to the point where I have gait and balance disturbances, bulbar issues, dizziness, and I can’t drive and can barely walk. My baseline is very manageable but I’ve had two very debilitating flares in the past 20 years. The 1st flare was concurrent with a very bad mononucleosis infection.

My symptoms are very consistent with the term “ascending paralysis”, typical of AIPD and CIPD which I understand can often be linked to or triggered by an Epstein Barr mono type virus. However, my EMG was only very slightly abnormal. So a diagnosis is still elusive.

I’m seeing now that there are quite a few papers out there that say these demyelinating auto immune disorders like AIPD and CIPD don’t always cause issues with EMGs as the nerve sheaths are being attacked vs. the nerve itself.

So I was curious, does anyone else have AIPD or CIPD type auto immune disorders and near normal EMGs?

Is a spinal tap always necessary for a formal AIPD/CIPD diagnosis?