Reply To: New to this…
It is surprising that a neurologist wouldn’t have heard of it, although many might have no experience with it. It not a common disease.
A nonspecialist probably wouldn’t have heard of it, but any physician should do knee reflex tests and recognize that some kind of neuropathy may be present.
There is research being done all the time on this disorder as for most, but neuropathies are difficult and not understood in detail.
As for the cause, it is generally not possible to say precisely what triggers CIDP, although it is generally thought to be an infection. There may be many different infections which could cause it, so it is not too surprising that it might be associated with a case of mononucleosis. Sometimes the infection is not apparent, as it need not have clinical symptoms to trigger CIDP or GBS.
Your own biochemistry is part of the equation also, because an infection which causes CIDP in some people will not do so in most.
Good luck with your treatment. I am glad you got a good diagnosis. “Fibromyalgia” is just a catchall term meaning “we don’t know what’s wrong with you.”