Does anyone have Anti-MAG with Cryoglobulinemia with IgG MGUS?

Hi @lanijean11, I think your questions may be served better if this is addressed in the blood disorder group. The problem with peripheral neuropathy and attributing factors is that it is hard to narrow down whether the neuropathy and the MGUS are coincidentally or causally related. There’s a very long but informative paper put out by the Mayo clinic on this topic which I’ve attached in case you haven’t looked at it. Maybe some of our other members will chime in with their anecdotal information as well.
https://www.mayoclinicproceedings.org/article/S0025-6196%2817%2930118-0/fulltext

@pmm I am being seen at UCSF Oncology and Neurology. It has been established that I do indeed have Anti-MAG and Cryoglobulinemia. I have been slotted in the extremely rare disease category due to the fact that my M protein is IgG not an IgM protein. I have gone through almost 10 years of testing and this has been the final conclusion. I would just love to find someone who falls in my category to talk to

I am a 67-year-old female diagnosed with anti-MAG with a IgG MGUS and Cryoglobulinemia.
Symptoms have been ramping up as of late.
Over 6 years ago, they (UCSF) questioned whether or not I had MS. Then because of a monoclonal band and slowly increasing monoclonal serum protein count, it was a possibility of multiple myeloma. Last year in October my then oncologist had be tested for Anti-MAG and I tested positive. I also tested positive in 2024 for Cryoglobulinemia. My peripheral neuropathy is pretty hefty numb all the way from my toes up to my knees. My face goes numb and because both the anti-mag and the Cryoglobulinemia my body does not do well obviously in cold or heat. The two diseases exacerbate each other. My fatigue is hefty. The last bone marrow biopsy was negative and UCSF wants me to go back in July and do another bone marrow biopsy to see if there is and abnormal protein or B cells.

@lanijean11 first of all welcome to Mayo clinics connect. I hope that you will find, as I have, a community of support here. Although it’s unlikely that I will find someone with just the same symptoms and just the same lab results, imaging findings, and diagnoses, we have many commonalities.
I was diagnosed with MGUS in 2021. I have been fortunate in that my numbers have remained in the MGUS range and I have not progressed to smoldering or multiple myeloma. Because the risk of progression is very low, I hope to maintain my MGUS status indefinitely.
I have peripheral neuropathy in my feet. So far it has caused problems with balance and pain, but it has been otherwise fairly benign.
I am not familiar with Cryoglobulinemia nor with Anti-mag. Although they “watch and wait” with MGUS, do they offer treatment for either condition?
Hugs.
Patty

Dear all,
I have a question for those with anti-MAG neuropathy or clinicians/researchers familiar with it.
I recently came across this post and it stated they have anti-MAG neuropathy associated with an IgG monoclonal MGUS rather than the usual IgM paraprotein. My wife's experts say she can't have anti-mag with an IgG M-spike but could they be wrong?
My understanding was that anti-MAG neuropathy is classically associated with an IgM monoclonal gammopathy,
Have any forum members been diagnosed with confirmed anti-MAG neuropathy in the presence of an IgG monoclonal protein rather than IgM?

If so:
Was the anti-MAG antibody level strongly positive?
Was the antibody shown to be IgG rather than IgM?
Were nerve conduction studies consistent with classical anti-MAG neuropathy?
Was another cause for the neuropathy considered?
I would be very interested in any published papers, case reports, or personal experiences, as I am trying to understand whether true anti-MAG neuropathy can occur with an IgG paraprotein or whether these cases usually turn out to be something different.
Many thanks
Jon

@jonyb interesting questions. My neurologist notes on his visit summary that my neuropathy is “likely” caused by MGUS, but my Hematologist/oncologist charts, “pt suffers from peripheral neuropathy” but he does not attribute this to MGUS.
I found this interesting.
https://ashpublications.org/hematology/article/2024/1/499/526243/Neurological-manifestations-of-MGUS
I’m hoping others will offer some inside.

@jonyb my oncologist and neurologist both have confirmed that you can have Anti-MAG with an IGg paraprotein. It is extremely rare. I would like to post to you my bloodwork and tests as any help and thoughts would be deeply appreciated.

I'm waiting on a pdf I can upload. I tried to copy and paste my last clinical notes and bloodwork but it was too much.

@pmm Great paper thanks, similar to one I paid for but better I think. My wife is in a similar situation, but she can't get past Radiculopathy or Neuropathy, even though 3 doctors have said it is PN and 3 podiatrists, Neurology is blaming it on anything else, latest is over sensitivity, Functinal Neurological Type disorder due to radiculopathy, but we have an expert in this at the hospital, so hopefully my wife will see him soon. Two years and getting worse, m-spike is stable but kappa free light chains rising slowly but steadily.

@lanijean11 Thanks for this, I have message privately but look forward to bloods etc. anything that may help.

Thanks again

Jon