[Rosie+George]

MGUS with lambda light chain excess w/o AL - concern?

by Rosie+George on Wed Oct 23, 2013 1:17 pm

I'm currently battling a neuro-lyme flare. Part of the work up was an SPEP.
M-Spike came back at 0.9, IgA 78 and positive double MTHFR A1298C homozygous mutation.

I was referred to local community hematologist.

Additional labs showed abnormal Kappa/Lambda ratio of 0.20 with elevated Lambda free light chains of 56.96. IgA 66 and M-Spike now 0.61.

Hematologist reccomended bone marrow biopsy because of the lambda light chains.

Biopsy results showed negative for myeloma at only 3-5% monoclonal plasma cells with lambda excess and negative congo red staining for AL amyloidosis. CD45 was 96.59% and a rare megakaryocyte was also present.

24 hr urine was negative and metabolic panel also normal. Bone x-rays were also negative.

Based on the negative BM findings the only thing diagnosed was MGUS.

The hematologist advised that in the absence of any kidney abnormality or AL I do not need to worry about the abnormal lambda light chains and just need my M-Spike monitored yearly.

My immunologist believes that I should see a myeloma specialist. But should I ? Or is my local hematologist correct and I don't need to be concerned over the light chains?

Seeking a second opinion doesn't hurt but would like to know how aggressive I need to be in pursing it or if it can wait a while.

Oh, I forgot to mention that I am only 36 yrs old, if that makes a difference.

Thank you so much.

[Multibilly]

Re: MGUS with lambda light chain excess w/o AL - concern?

by Multibilly on Sun Nov 03, 2013 4:53 pm

I would establish a relationship with somebody and lives and breathes this disease, even at the MGUS level. If your insurance is covering all this, I would be getting all the standard monitoring tests every year, including free light chains, for people diagnosed with MGUS.