Reply To: GBS relapses, residuals? When does it become CIDP?

jk
May 4, 2014 at 6:32 pm

The link Jim gave is an excellent resource, one of many available directly from the GBS-CIDP organization.

Above you said, ” I thought CIDP only differed from GBS in duration?

According to some, the National Institutes of Health (NIH), for example, that is true- “CONCLUSIONS: The diagnosis of acute-onset chronic inflammatory demyelinating polyneuropathy (CIDP) should be considered when a patient thought to have Guillain-Barré syndrome deteriorates again after 8 weeks from onset or when deterioration occurs 3 times or more…”

The medical establishment’s reply to your question, “they would have seen it “in the lab results”” sounds preposterous to me, nay it is beyond preposterous it is disingenuous at best, depending on their definition of “lab results.” Refer to Jim’s link above for an understanding of how CIDP is diagnosed.

The standard disclaimer ‘everyone is different’ and the standard recommendation ‘seek a neuromuscular specialist’ particularly one at a GBS-CIDP center of excellence still apply. It is of paramount importance that EMG/NCV testing be performed and evaluated by an expert. Not any ole somebody who took a weekend seminar.

My view of the television series ‘Mystery Diagnosis” is that the first 1-10 doctors, although perhaps well intentioned, never get the ‘correct’ diagnosis and we patients are too often content to heed their mistaken advice.

good luck obtaining a definitive and accurate diagnosis with appropriate treatment