Reply To: Exacerbation – scared

June 13, 2012 at 11:34 am

Bny- it is all so confusing- just to reassure you the polyclonal gammopathy is constant with receiving ivig- it reflects the different gammaglobulins you are receiving with ivig- not sure why you have papilledema it can have a number of causes and is not specific to one diagnosis- I would definitely follow that up . Part of the problem of getting a lot of tests for anyone is that many people have abnormalities that are benign and that they would have done fine without knowing they are there- you spend a lot of time chasing these down – I myself had to have a bone marrow biopsy as my lumbosacral MRI showed an increase in signal in the bone marrow- turned out to be completely benign but since these tests are so sensitive they pick up everything!
In regards to your fear of having your diagnosis changed and no longer having your insurance pay for IVIG I would not worry about that as any neurologist would be aware that the IVIG has helped you and this is well documented in your case- sometimes this in itself helps to support CIDP- since you are an excellent responder and tolerating well they really cannot justify denying you of this beneficial treatment.
Hope you continue to feel well