I have some questions that maybe Norb or Allaug can help with. As background, I was diagnosed with CIDP in 2004, with slowly developing motor and sensory impairment. My diagnosis was adjusted to CIDP Lewis Sumner variant in 2005 due to the asymmetric nature of disability. I have received IVIG on a weekly or bi-weekly basis since 2004, which slows progression, as progression demonstrably speeds up on the occasions treatment was interrupted. In late 2005 I was switched to high dose IV Solumedrol, which triggered a massive exacerbation that left me severely disabled for 8 months, I was returned to IVIG in Mar. 06 and I am still quite disabled but measurably better than before.
My immunoglobulin levels were measured twice. In Aug. ’04 my IGM level was 244. In Sept ’05 my IGM level was 400.
On both occasions an electrophoresis detected no paraprotein or monoclones. I had a second lumbar puncture with isoelectric focusing of the CSF and serum in Mar. 06 which revealed Oligoclonal bands in the CSF, but none in serum. I also had a bone marrow biopsy in Mar. 05 that was reported to me as normal.
As is with Norb, Andrew and Allaug, my pure IGM count is high, and was acknowledged as such by a specialist in his written consultation report – however, no mention of MGUS has ever been noted to me verbally or in any medical record by anyone.
I wonder if IVIG therapy raised my IGM count, thus its coincidental to the treatment?
What do you make of this? I also find it odd that Solumedrol was so devastating, and that IVIG is really only modestly effective – which seems to have parallels to Norb and Allaug’s experience?. Is MGUS something other than just an elevated IGM count?
I have been seen by very top specialists at UCLA, Mayo Clinic and UCI. Th elevated IGM count was discovered and noted by UCI and seen by Mayo doctor, I’m assuming, with as I’ve said NO MENTION OF MGUS or its possible relation to the CIDP.
My main issue is that I am pondering suggesting moving to more powerful treatments beyond IVIG to try to really knock this disease down, and I believe there are clues in my story that might lead to the correct choices, if a doctor can just put the pieces together. I’m 45 years old.