[chrismcd99]

Recently diagnosed with MGUS

by chrismcd99 on Sun Nov 20, 2016 10:30 am

Hi.

My name is Chris. I am a 57 year-old mother of 7, grandmother of 7. I was recently diagnosed with MGUS after seeing a neurologist for balance/coordination issues. I started seeing her in August and she ran a battery of blood / urine tests. I asked her if she was looking for something in particular and she said multiple myeloma. I really didn't expect anything to come of it. I went back last month and she ran more blood/urine test.

I got an email from her 2 weeks ago. She's sending me to a hematologist-oncologist due to MGUS diagnosis. I have the M spike and IgG light chain. My numbers aren't real high and I don't really know what to expect. I see him tomorrow afternoon.

I was referred to this site by a relative who has stage 3 multiple myeloma. I have been reading everything I can, like everyone else I'm sure. It was nice to find a site just to be able to get this off my chest and have someone else that is going through the same thing.

Once I find out more from the oncologist tomorrow (or as soon as possible), I will post the info. Everyone have a nice week and Thanksgiving.

[Lorrie]

Re: Recently diagnosed with MGUS

by Lorrie on Sun Nov 20, 2016 3:34 pm

Hi Chris,

I too am a grandmother of 7 and have the same diagnosis as you do. I too do not understand any of it. Please let us know what you find out so we can learn more from your experience.

Lorrie

[chrismcd99]

Re: Recently diagnosed with MGUS

by chrismcd99 on Mon Nov 21, 2016 2:57 pm

Lorrie, thank you for your reply. I will post later what I find out. There is so much I don't know or understand. I have so many questions.

Take care.
Chris

[cazzamac]

Re: Recently diagnosed with MGUS

by cazzamac on Fri Nov 25, 2016 7:39 am

Hi Chris,

I am a young 65 year old mother of two and grand­mother of 5. I was diag­nosed 4 months ago with smol­der­ing myeloma after having persistent low white blood counts. I'm having monthly blood tests to monitor it. I have specialist in myeloma looking after me, which is a comfort. I consider myself fortunate to have no damage to my body now.

Good luck to you.

[chrismcd99]

Re: Recently diagnosed with MGUS

by chrismcd99 on Tue Nov 29, 2016 5:06 pm

Hi everyone. I hope everyone had a nice Thanksgiving.

I received my blood test results back today, no urine test results yet. There are so many I don't know what I should post, that maybe someone could explain.

I have the

1. IFE,PE and FLC serum details
2. CBC with differential
3. Comprehensive metabolic panel
4. Beta 2 Microglobulin serum, and
5. Protein Electrophoresis Random.

I don't know which numbers out of these would be helpful.

I found out my total skeletal xrays came back normal – no lesions, holes, or fractures. I do have an appointment with a doctor that specializes in MGUS and multiple myeloma in 2 weeks.

Thank you for any info. I feel like I'm going nuts not understanding any of this.

Chris

[Multibilly]

Re: Recently diagnosed with MGUS

by Multibilly on Tue Nov 29, 2016 6:13 pm

Hi Chris,

That's great news that your skeletal survey came back clean!

These are the big things you will care about from these tests:

1. IFE,PE and FLC serum details: Monoclonal type from the IFE (IgG-kappa, lambda-only, etc). M-spike (aka abnormal protein band, paraprotein, M-protein, etc) from the PE. Kappa, lambda and ratio values from the FLC test.
2. CBC with differential: Hemoglobin and RBC values
3. Comprehensive metabolic panel: Calcium and creatinine values.
4. Beta 2 Microglobulin serum, and: Beta2 microglobulin value (you typically only care about this at the time of diagnosis).
5. Protein Electrophoresis Random. Random protein electrophoresis is not as useful as 24-hour electrophoresis test, but feel free to post the results.

When you post any results, please include the units of measure (g/dL, etc) and the reference ranges. If you keep an eye on these values as you get tested over time, you can usually see any issues or organ damage that might be developing.

[chrismcd99]

Re: Recently diagnosed with MGUS

by chrismcd99 on Tue Nov 29, 2016 8:20 pm

Hi.

Here are my numbers from October 30.

My M-spike is 0.2 g/dl (2 g/l). It shows the presence of IgG lambda monoclonal protein.
Total protein 118 mg (24hr).
Albumin, alpha1, alpha2, beta globulin are all too low to quantitate.

My blood results from November 20 are different. Two different labs. These are blood results only due to the lab failed to do all the urine tests requested, so I have to go back Friday to do another urine test. Also, it's only a spot test instead of 24-hour test. I don't know if that makes a difference.

No M-spike present this time.
Immunofixation result is normal.
Kappa / lambda 1.24
WBC 10.4 (4.5-10.5)
Hgb 14.4 (11.0-18.0)
Creatinine 0.54 mg (0.57-1.00 mg/dl)
Calcium 9.7 mg (8.7-10.2 mg)

The oncologist that ran these tests just called and said everything looked normal. I asked him about the previous tests ran by my neurologist which showed the M-spike and IgG light chains. He said I must have a very mild case so, for my peace of mind, he thinks I should still see the myeloma specialist. I am anyway.

I really appreciate all of your input. Have a good evening.

[Multibilly]

Re: Recently diagnosed with MGUS

by Multibilly on Tue Nov 29, 2016 8:57 pm

Hmmm, maybe you don't have MGUS at all since your latest test IFE and PE test results don't indicate any monoclonal protein whatsoever? There have been a few folks on this forum that briefly registered an M-spike and then it just resolved itself after a few months. But I've only seen this happen when one's M-spike is quite small (likes yours was on October 30th). In any case, I imagine your doc will say to come back in a few months to get-retested just to see what is going on.

A 24-hour urine test has the ability to more accurately register more minute quantities of proteins and compounds than does a random urine urine test since the sample is taken over 24 hours. The 24 hour test also averages out all the normal fluctuations in compound levels that one would see in their urine at any given time of the day. You can also do some key tests on a 24-hour urine test such as creatinine clearance and Bence Jones (FLC) protein testing that one does not normally do on a random urine sample.