Reply To: How bad do symptoms need to be before tests show abnormality?

Jim-LA, thank you for your reply. You and GH and others have been nothing but kindness to me, guiding me through this difficult process.

I think it’s very likely what I have is a relatively typical and relatively slow (but not as in taking-years-to-show-up slow) onset CIDP, currently in its early stage. I simply have no other explanations for my symptoms.

My neuro laughed at the idea, saying if it’s triggered by a flu shot, it’s either GBS or acute onset CIDP, never slow onset CIDP. But I know that is not true from reading this forum and livingwithcidp.org. I have read from many posters who got slow onset CIDP after vaccinations.

Right now, all I can do is to wait till my nerves deteriorate enough so damages can be seen on EMG and NCV. It’s terrifying, both physically and mentally. CIDP can start slow and turn nasty in a flash. And my biggest fear is I am one of those who will always have normal tests despite of severe symptoms and nerve damages.

I wait and pray for a positive test and a diagnosis.