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No diagnosis yet but very confused

by MJW2208 on Sat Jun 21, 2014 12:31 am

Hi everyone. I've been struggling with joint pain for about a year. My mother had RA and my sister has a whole host of auto-immune issues. So my primary ran some tests and everything was normal except my Sed Rate which was 85. Over the last year my Sed Rate has never dropped below 50.

I was referred to a rheumatologist and since RA test was negative I've been on naproxen [Aleve, Naprosyn] and that's about it. The pain has been getting worse and spreading so I saw a different rheumatologist to get a second opinion. I just wanted to try methotrexate or some stronger arthritis med to see if I got any pain relief.

New rheumatologist ran more tests and I got an email that said I had monoclonal protein and I needed a hematology consult. I don't understand these test results and I haven't spoken to the doctor yet but I've been googling and the main think that worries me is my M Spike.

The report reads SPE M-Spike 1% 16.1 and SPE M-Spike 1 1.37. Can anyone please help me context that? I can't seem to find any discussions of ranges other than zero is normal.

I know I will find out more once I either have the hematology consult or talk to my rheumatologist, but this all just happened and it's Friday night and I googled when I shouldn't have and now I'm concerned. Any info would be very much appreciated !

Thanks,

Mike

MJW2208
Name: Mike
Who do you know with myeloma?: Me
When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
Age at diagnosis: 55

Re: No diagnosis yet but very confused

by Ian on Sat Jun 21, 2014 4:26 am

Sorry to hear about the joint pain you've had, Mike, and about the stress you're feeling right now due to your lab results.

As you probably have found out by now, the SPE test is the serum electrophoresis test, often abbreviated SPEP instead of SPE. It appears, based on what you've provided so far, that you have an M-spike of 1.37 g/dL. (The units are important with M-spike results. In the U.S., they are typically g/dL. In other countries, they are usually g/L.)

An M-spike of 1.37 could mean a number of different things, and not all of them are really bad. So it's too soon to jump to conclusions.

Can you cut and paste into a posting here more of the results from the SPE test and, perhaps, any other blood work you had -- for example, results showing your hemoglobin, calcium, and/or creatinine levels in your blood? Or can you scan the results and upload the scanned page(s)? (You could fold over the section of the page with your name, or edit it out, before uploading the scan.)

The most important thing right now is not to jump to conclusions without further information from a doctor.

Ian

Re: No diagnosis yet but very confused

by MJW2208 on Sat Jun 21, 2014 11:57 am

Thanks, Ian. I know I shouldn't jump to conclusions and if they had given me ANY info before the weekend, I might have done better.

Let me see what I can cut and paste:

Component Results
Component Standard Range Your Value
Creatine Kinase (CK) 30 - 220 U/L 188

Component Results
Component Standard Range Your Value
Anti-Nuclear Antibody Screen NEGATIVE NEGATIVE

Component Results
Component Standard Range Your Value
Cyclic Citrullinated Peptide Antibody <5.1 U/mL 0.0
TEST REPEATED TO CONFIRM

Component Results
Component Standard Range Your Value
Rheumatoid Factor <20 IU/mL <20


Comments from the Doctor's Office
This shows a monoclonal protein which can be seen in inflammation and some hematology/bone marrow conditions. I will suggest to Dr. M. that he arrange a hematology consult for you since I will want to have that information before we consider MTX. I am still waiting on the CCP antibody.

Component Results
Component Standard Range Your Value
SPE Interp Hypergammaglobulinemia. Increased alpha globulins. Monoclonal in the gamma
region. IFE to follow. "I have personally performed the interpretation".
SPE Total Protein 5.8 - 7.8 g/dL 8.5
SPE Albumin % 53.5
SPE Albumin 3.97 - 5.34 g/dL 4.55
SPE Alpha 1 % 2.6
SPE Alpha 1 0.11 - 0.32 g/dL 0.22
SPE Alpha 2 % 10.7
SPE Alpha 2 0.40 - 0.88 g/dL 0.91
SPE Beta % 9.2
SPE Beta 0.60 - 1.02 g/dL 0.78
SPE Gamma % 24.0
SPE Gamma 0.53 - 1.37 g/dL 2.04
SPE M-Spike 1 % 16.1
SPE M-Spike 1 1.37
General Information

Component Results
Component Standard Range Your Value
IFE Serum Monoclonal IgG-lambda detected. "I have personally performed the
interpretation." Dr. S. Pizzo, MD,PhD


That's it. My rheumatologist just said she'd like me to have a hematology consult but I don't have anything scheduled as yet.

Thanks again....Mike

MJW2208
Name: Mike
Who do you know with myeloma?: Me
When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
Age at diagnosis: 55

Re: No diagnosis yet but very confused

by MJW2208 on Thu Jul 17, 2014 9:33 am

So I still don't have a diagnosis but I had a bone marrow biopsy 7 days ago and am now just waiting for the results. After a ton of xrays, the radiologist could not rule out multiple myeloma based on the films and my M-Spike nearly doubled in a little over 2 weeks.

Because of those two things, the oncologist said we needed to do the biopsy. I was just looking at the test results and the M-spike is 2.19 g/dL with the IgG being 2470 mg/dL.

They found no Bence Jones proteins.

I'm going crazy waiting for results. Is the rapid increase of the M-Spike over a short period of time really that telling ? Can anyone help me out with that ?

Thanks so much, Mike

MJW2208
Name: Mike
Who do you know with myeloma?: Me
When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
Age at diagnosis: 55

Re: No diagnosis yet but very confused

by Toni on Thu Jul 17, 2014 10:30 am

I don't have answers for you, but I just wanted to say I'm sorry you are going through this. From what I've read on this forum, the waiting often is the hardest part. Often there's few hard and fast rules which makes it more frustrating and worrisome for patients.

Yes, I would be concerned about the M-spike doubling. I haven't been around long enough to know if this happens very often. The bone marrow biopsy will be much more informative, but I think that takes much longer to get the results from. Do you know when you will get the results?.

What was the radiologic report? This would help to get a better idea of what you're dealing with. Did they note lesions at all? If so, this might indicate SMM or multiple myeloma.

It is too soon to tell, but clearly you have an M-spike and if you can find the results of your x-rays that would be very informative while you're waiting on the BMB.

In the meantime, you've found a good place for resources and others who have or are going through similar experiences as you.

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: No diagnosis yet but very confused

by MJW2208 on Thu Jul 17, 2014 10:51 am

Thanks, Toni.

On the bone scan they basically found one lesion on the neck of the femur but they thought it was a "bone island". Even so, the radiologist could not rule out multiple myeloma. The only other thing noted was a "lucency" in the humeri and again, the radiologist said she could not rule out multiple myeloma.

To me, the whole "can't rule out" language sounded very CYA, which is fine. So I'm not terribly concerned, although this whole thing started because of all of the pain I've been having, a fair amount of it bone pain.

That was pretty much it from the radiologist.

The oncologist seemed more concerned about the M-spike rapid increase. I get the results back on the 24th, so another week to go. But I feel like I'm just sitting here twiddling my thumbs when I should be DOING something, but there's seems to be nothing that I can DO except wait; something that I'm not very good at!

MJW2208
Name: Mike
Who do you know with myeloma?: Me
When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
Age at diagnosis: 55

Re: No diagnosis yet but very confused

by MJW2208 on Thu Jul 17, 2014 12:18 pm

Hi. I'm also curious to find out if there is any kind of correlation between an elevated SED rate and multiple myeloma. I've been seeing a rheumatologist for a year. I was having join pain and my primary ran some blood work and my sed rate was 85. He referred me to a rheumatologist.

My sed rate has remained consistently high for the past year at 85/80/60/73/50. I decided to get a second opinion and saw another rheumatologist who ran some bloodwork and found my M-Spike of 1.37.

That got me on the MGUS or multiple myeloma track with an oncologist but somehow I missed that an elevated sed rate could signify myeloma.

Thanks ... Mike

MJW2208
Name: Mike
Who do you know with myeloma?: Me
When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
Age at diagnosis: 55

Re: No diagnosis yet but very confused

by Dr. Jatin Shah on Fri Jul 18, 2014 7:57 pm

Dear Mike

I agree the skeletal survey sounds vague and am not convinced of active myeloma. Importantly , myeloma typically does not affect the joints, (usually limited to long bones/pelvis/spine), and your long standing joint pain and sed rate are unrelated to myeloma.

It will be helpful to have the following CBC: specfically hemoglobin, creatinine, bun, calcium. albumin, Beta2-microglobulin, which you may already have done which can help distinguish active myeloma from MGUS / smoldering myeloma.

Dr. Jatin Shah
Name: Jatin Shah, M.D.
Beacon Medical Advisor

Re: No diagnosis yet but very confused

by MJW2208 on Fri Jul 25, 2014 3:14 pm

I got the results of my bone marrow biopsy and my diagnosis is now officially MGUS. 5% plasma cells in the bone marrow, no Bence Jones and no lesions visible in the xrays. M Spike of 2.19.

So we're going with blood work every 4 months for now and if everything is ok, that will be pushed back further.

I have to say, I have never been as confused in my life as beginning to do my research on multiple myeloma and discovering how complex it all is. And the Beacon was a tremendous help!

Best of luck to all of us!

Mike

MJW2208
Name: Mike
Who do you know with myeloma?: Me
When were you/they diagnosed?: MGUS 5/2014, SMM 5/2017
Age at diagnosis: 55

Re: No diagnosis yet but very confused

by Toni on Fri Jul 25, 2014 6:58 pm

Mike -

Glad to hear they confirmed MGUS. This is very confusing stuff, isn't it??? And I couldn't agree more: The Myeloma Beacon is a great place to get accurate, precise, validated information. There's too much "junk" out on the Internet that only makes it more confusing.

All the best to you :-)

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

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