Have you had a bone marrow biopsy? To quote an education professor of mine, that might "nail the jello to the wall"! LOL!

It appears that you my be experiencing "anticipation anxiety". Enjoy your life and look up a Serenity Prayer 🙏
God Bless,
Curt , Newfoundland

@A MyMyelomaTeam Member,
Thank you so much for your informative post to my question and for sharing your own experiences with me. It was very helpful to read and you asked a lot of good questions.
I’m so sorry to hear you have shingles. Hopefully, you are able to take Gabapentin or something similar to help with the pain. I know of a few people that have shingles right now and I know it’s excruciating.
I will do my best to answer your questions. 😊
When I became very ill to the point of hospitalization (3/2021) they ran a lot of tests. At that point my ESR was mildly elevated & I had a highly positive ANA. Everything else was normal, except I was having heart rhythm issues for unknown reasons and it came out of nowhere. I was finally stabilized and slowly able to walk again and get myself off of beta blockers etc. Eventually, one test showed that I have Small Fiber Neuropathy & my rheumatologist ran a SPEP/IFE on me that showed a small amount of M protein…too small to measure. Days later that same test was performed again and there was no M protein. I have not seen that M protein for 1.5 years again until this month. This month my SPEP/IFE shows an asymmetrical peak in the gamma region, but no M protein is detected.

Mayo In Rochester, MN believes my issues are autoimmune related since my Bone Marrow Biopsy in 2021 was clean and no M protein is detected currently. However, one of my rheumatologists does not agree that it’s autoimmune because apparently immune disorders do not affect the Free Light chain ratio, but can affect the Free light chains. Both are mildly elevated in my case.

My local oncologist/MM specialist believes that I have early IgA Kappa Light Chain MGUS.

My LDH, Beta 2, CRP levels have always been normal.

My eGFR has been trending down over the last 2 years from my highest being 105 to my current lowest being 63. I have no explanation for that.

My Ferritin has always been on the low normal side of 16 (11-204 ng/ml is the normal range) I have had unexplained hair loss for a few years now & fatigue.

13 years ago I did acquire Epstein Barr while caring for patients at the hospital working as a nurse.

I hope I have answered all of your questions. I’d love your input. Thank you again for taking the time to respond. I will be keeping you in my prayers. I hope you feel better soon! 🙏🏻🌼

Mentioned Users

A MyMyelo...

I know your case is odd.
You have been labeled a Kappa, IgG or IgA ?
Mine as well is odd.
Im IgG Lambda, but at diagnosis, both IgG and Lambda were in the 600s, versus the typical MM patients where those would be in the 1000s.
IgG 600 is not even high, its right at the border of low normal, below that being abnormally low.
Some people are born with a condition of chronically low IgG, called hypo gamma globulinemia.
They have to have lifetime IgG infusions.
Have I had low IgG all my life, and just never knew it ?
I had my share of bugs over the years, but never had kids, so was not exposed to continuous viruses.
I was always tired from my late 30s on, emergency diagnosis as 64, Im 65 now.
Raging symptoms by the time I was 45, very fatigued, hair falling out, but Hemoglobin of 12 was deemed "normal", and a diagnosis was missed for literally 15 yrs.
Even when I went to a neurologist and a cardiologist, complaining of feeling light headed and fatigued.
Unfortunately I started taking an iron supplement, and felt better, and I concluded I was "just anemic, subclinically".
The iron supplement masked the problem and kept me going.
MM cells use iron.
I know I progressed from smoldering to magus, to full blown MM.
How is your IgG ? and your IgA and M ?
Ive had an IgG infusion every 4-5 months, to keep me between 400 and 650.
I havent been prone to any respiratory or bladder etc infections, despite chemo most of 2022.
On Darza maintenance now.
I recently screwed up, stopped my daily prophylactic Acyclovir that we all take, and got Shingles.
I was going to get the Shingles vaccine, and just didnt get it done.
its agonizingly painful, Im fighting it right now, had it a month.
At diagnosis:
Lambda in the 600s was high, but not as high as some patients.
I was labeled IgG Lambda, but "predominantly light chain".
My M spike has always been very low, too faint to measure, or non-existent.
I take that to mean, without robust heavy chains, ie the Ig gamma globulins (either A or G) one cannot produce enough complete proteins to measure.
An antibody is a complete protein, with 2 heavy chains and 2 light chains.
That is my understanding.
My doc said, it is light chains that damage kidneys, not heavy chains.
But without an Mspike, light chain cases are harder to follow ?
Must remember, the Mspike is just a proxy for the disease itself, a marker.
Theoretically, the disease could be "busy", without an Mspike.
Thats my understanding.

Continued ...
Yes, my MM was busy, with a low Mspike and Lambda only 650 ... at diagnosis, I had a plum sized tumor on Lumbar 5, that had busted the vertebrae into pieces, had to have emergency surgery.
I had no other lesions visible anywhere on a PET.
If it had not been for the large lesion, I would have been Stage 1 by just my blood numbers.
All my numbers were acceptably OK, ... white and red cells at low normal, LDH normal, Beta 2 just a tad higher than upper normal, Albumin and Calcium good, kidney function perfect.
On paper, no one would know how sick I was at the time (with the Lumbar tumor).
What is your Ferritin, Beta 2, LDH, C Reactive protein ?
Have you been tested for various viruses, like those in the herpes family (Epstein Barr, CMV, herpes 1 and 2)?
There are various markers for auto immune diseases - Have all those been tested ?How elevated is your Kappa ?
How often do you get it tested ?
Is it trending up, neutral, or down ?
Is your Lambda in a normal range ?
Have you ever had a positive Mspike ?
How often do you do an egfr test ?
When you say its trending down, what are the numbers ?
Do you have high blood pressure, or other kidney disease in the family ?
You said that there are no abnormal proteins in your urine, so that's good ?
Did you have prior urine tests that were positive for the abnormal proteins ?
Why does your kidney doc disagree with your rheumatologist ?
What are you doing as far as alternative treatments, if any ? (example: a plant based diet, to change your gut microbiome)