[MichaelB]

Cluster of symptoms & abnormal tests: what does it mean?

by MichaelB on Fri Oct 09, 2015 3:30 am

Hi,

My diagnostic journey that leads me here started with abnormal kidney function.

I have had an ongoing increasing serum creatinine levels over the past year - the latest at 1.71.
Urine positive for micro proteinuria and occult blood, with a CKD stage 3 diagnosis, I finally insisted on seeing a nephrologist who ran a battery of tests. (24 urine, protein electrophoresis, Immunoglobulins, immunofixation, RF, ANA, ANCA, C3+C4, HepB, HepC, CBC,CMP, kidney function panel, protein / creatinine ratio).

From all that, here's what came up:

IgM consistently elevated over 6 months 3 tests - 385, 385 and now 448
Creatinine (serum) elevated and climbing 1.55 a year ago - 1.61 3 months ago, 1.71 now.
BUN climbing and now at 25 (top of normal range)
Slight anemia: hemaglobin 13, hemocrit 37.9, RBC at 4.25 (bottom of normal range).
24- hour urine protein / creatinine ratio: Creatinine 2.68 (H), Protein 230 (H), Ratio 86 (H)
Calcium at 9.3
No Bence Jones pattern on urine, normal pattern immunofixation.

Lipids:
Cholesterol last year 131 (HDL 42 / Trig 106 / LDL 68),
6 months later total 106 (HDL 43 / Trig 88 / LDL 45(L)) -
No explanation for drop - diet and medications are consistent.

Previous high uric acid levels (no recent test).

All the other tests - negative/normal.

After referral to a hematologist - a couple of other tests:

Kappa / lambda free chains:
Kappa 38.2 (H), Lambda 27.9 (H), ratio 1.37 (normal)
SED rate normal, viscosity normal

My history - Coronary artery disease - cardiac stents, GI bleeds (x3 - finally found and fixed -diverticular bleed). Parkinson's diagnosis in April 2014.

Current symptoms:

Weight loss (20 lbs over last year), pitting edema legs, fatigue - major, concentration loss, gait disturbance, tremor (right hand), head, dystonia (shoulders, neck, right arm), pain in right ankle. Periods of loss of appetite due to fatigue, and several instances of nausea after eating.

Current meds:

Aspirin (325 mg), Metoprolol ER(25 mg), Lisinopril (10 mg), Lipitor (20 mg), Flomax (0.4 mg), Lasix (20 mg every other day), Requip (4 mg XR), Sinemet 25/100 (2 tabs Q 5 hrs 3x/day), Azilect (0.5 mg). Quarterly botox inj. for dystonia (shoulders and neck)

A regular walking pharmacy ... they are broken down by heart, kidney and Parkinsons.

The nephrologist isn't clear why the kidney function is continuing to decline. One possibility is toxicity from imaging contrast (although there hasn't been any imaging in over 18 months). She's thinking protein deposits could be doing it as well.

I'm seeing something wrong with liver function - yes I'm on low dose Lipitor, but have been on that dose for many years, and nothing explains the drop in LDL to 45. My diet isn't particularly good, and hasn't really changed much (except as noted above).

Edema may be caused in part by Requip - a reduction in the dose did help, but not eliminate the problem, which has been going on before the Requip was started.

I'm at a loss as to what's going on – and I think these docs also don't know. They are just watching and repeating tests, while my kidney's continue to decline.

What does the kappa / lambda test indicate, normal ratio but elevated? IgM elevated? Is there cancer somewhere? It's got me a bit freaked out.

What next? Biopsy, kidney or bone? PET scan? I can't stop the aspirin, so kidney biopsy is a bit extra dangerous.

I'm hoping something clicks for someone here and perhaps have seen this cluster of symptoms before or has something similar themselves.

Thanks for reading my 'data dump.' Hoping that it is complete enough to figure out what's happening.

[Multibilly]

Re: Cluster of symptoms & abnormal tests: what does it mean?

by Multibilly on Fri Oct 09, 2015 7:33 am

Michael,

Sorry to hear about all these issues. I'm not a doc by any stretch of the imagination, so please do follow up with yours. These are just comments to discuss further with your hematologist.

Having both elevated serum kappa and lambda values, coupled with a normal kappa/lambda ratio can possibly signal a polyclonal Immunoglobunin increase (in your case, IgM) or renal impairment.

http://www.thebindingsite.com/interpretation-of-freelite-results

Did the hematologist also run a serum immunofixation and a serum protein electrophoresis test? It would be a bit peculiar to run a serum free light chain assay without also running these two other tests. These other tests would respectively detect and measure any monoclonal proteins in your blood and would help determine if you have a polyclonal or monoclonal gammopathy (or something else going on).

If the immunofixation and serum protein electorphoresis tests showed the presence of monoclonal IgM, then a doctor might consider something like Waldenstrom's macroglobulinemia, amyloidosis or multiple myeloma. You would diagnose these diseases via a bone marrow biopsy (but you wouldn't do a biopsy before getting the other two blood tests I mentioned).

I might also suggest seeking out a hematologist that specializes in multiple myeloma if your hematologist isn't get anywhere with this. If you let us know what city you are in, folks on the forum can make some recommendations on where to find these guys.

[MichaelB]

Re: Cluster of symptoms & abnormal tests: what does it mean?

by MichaelB on Mon Oct 12, 2015 4:34 am

Hi,
Thanks for the reply Multibilly.
Yes, Immunofixation and Electrophorisis tests have been run. Serum Electrophorisis showed a normal pattern. Serum Immunofixation also came back normal. They also ran Electrophorisis on a 24hr urine sample. It was negative for Bence-Jones protein bands, although the total protein was 238 (normal <150) and Creatinine was 2.64 (normal .64-2.50) Protein/Creatinine ratio of 90 (normal <84). Immunoglobins were IgA 269 (N), IgG 1054(N), IgM 448 (H).
These were run by my Nephrologist before referral to the hematologist. The hematologist re-ran the immunoglobins, and ran the light free chains, viscosity and SED rate.
So.. from what I understand from all this - they are not seeing any monoclonal disease process, and the IgM appears to be polyclonal, and there is definite kidney dysfunction.
Nephrology is thinking the declining kidney function might be due to protein deposition.. with the elevated numbers, that could be so.
The bad news is that I just got results back on the latest serum creatinine levels and it's climbed to 1.90 and BUN has been hovering around 21 to 25 (top of range). My nephrologist is moving up my appointment (not that she has any idea what's causing the problem) probably to schedule invasive (biopsy) tests.
So what remains is why the persistent high IgM , elevated Kappa and Lambda and what the heck is causing the kidneys to fail.

Are there polyclonal IgM disease processes that could be going on?

Thanks for the response !

Michael