[britsmitOH]

Young mother with M-spike (M-protein)

by britsmitOH on Thu Oct 27, 2016 4:17 pm

My name is Britney. I am a mother of three young boys and I am 28 years old. Just two days ago I learned that there was an M-spike on my electrophoresis screening via blood test. (0.27 g/dL, or 2.7 g/l).

My journey to get to where I am has been a winding one. Each doctor seeing something that another didn't and would refer me on to the next person who knows more until I landed where I am now.

When I went in to see a rheumatologist, I thought my diagnosis would end with EDS (Ehlers-Danlos syndrome). When I got the results back of my electrophoresis, I had no clue what they meant. I took to reading about monoclonal protein and what it could mean. I was shocked (to say the least). Something this serious was never on my radar, yet somehow I am so thankful that each specialist I've seen at the Cleveland Clinic chased the rabbit down the hole and that we are now at this point so I can get help and treatment if it is needed.

A year ago, after a lifetime of pretty minor pains and hypermobility issues, I got very, very ill. I had excruciating lung pain that prevented me from laying down,coughing, laughing, or pretty much anything that required me to breathe in deeply. I also developed a very high fever with this illness. My GP diagnosed it as pleurisy and put me on prednisone.

I was on prednisone for a week and wasn't feeling any better, but worse, and we went to the hospitals. My blood counts came back slightly off but not terrible according to the doctors at the hospital (I've had several "off" tests over the last few years regarding blood counts), but one of my tests came back with an elevated marker for a blood clot (D dimer). I had a CT scan of my lungs and nothing showed up, I was sent home, and told to go back to my GP. I was only prescribed more prednisone for several more weeks.

During this time I developed severe pain in other areas of my body. Mostly arms and legs, especially in my elbows and knees. I couldn't go out in the cold, the pain was too much to bear. I've had back pain for the majority of my life up to this point (hypermobility), but I developed a very intense pain in my lumbar spine. In August the pain intensified 10x after a vague injury, and now I have limited mobility. I have developed a knot on my right iliac crest / joint area and it's extremely painful and tender. I am also very nodular in my tissues (pretty new to me in the last year or two years). I have a lot of random fevers and weird rashes that pop up on my torso area. I've been getting these weird rashes over he last 5 (?) years or so. They popped up with my second pregnancy and didn't come back until this last year, and I've gotten them pretty frequently (found out yesterday that they look pretty similar to lymphoma rashes).

I know this is a lot. I am just curious if anyone has dealt with this stuff. I am also looking for people who may know where I am going. I am one of those people that is comfortable facing a giant. I would just like to know that I am facing a giant and not be surprised when I show up for the fight. I like to research and feel prepared. I know when I go back for all the followup tests I will get more answers, I just want to feel ready for answers, I do not like surprises.

My electrophoresis results:

Component Your Value Standard Range

Protein, Total 6.8 g/d 6.0-8.4 g/dL
Albumin for SPE 3.80 gm/dL 3.37-4.23 gm/dL
Alpha 1 Globulin 0.23 gm/dL 0.18-0.31 gm/dL
Alpha 2 Globulin 0.61 gm/dL 0.52-0.97 gm/dL
Beta Globulin 0.99 gm/dL 0.84-1.36 gm/dL
Gamma Globulin 1.17 gm/dL 0.70-1.44 gm/dL

Interpretation (Prot Electro):

An M protein is identified on protein electrophoresis.
Recommend monoclonal protein analysis to further
characterize the M protein.

M-Protein Location: Gamma fraction
M-Protein Concentration: 0.27 gm/dL (0.00 gm/dL) H

I know this is a lot.. Sorry..

Thank you for any information you can give. I appreciate any help, advice, or encouragement that can be shared!

I am learning while I'm waiting. However, I am not very patient!

Much love sent out from Ohio,

Britney

[Entropy]

Re: Young mother with M-spike (M-protein)

by Entropy on Fri Oct 28, 2016 12:22 am

Have you had an immuno­fixation test (IFE) to categorize your M-spike? Have you had immuno­globulin levels performed (IgA, IgM, and IgG)? Your M-spike is low, but that doesn't mean you should ignore a full workup.

Sounds like you are in good hands at the Cleveland Clinic. Be sure to see a hematologist who specializes in MGUS, smoldering multiple myeloma, and multiple myeloma. You seem to have some possibly confounding variables with the pain you are suffering. Cross-consulting with a rheumatologist sounds like a good idea.

Good Luck!

[JPC]

Re: Young mother with M-spike (M-protein)

by JPC on Fri Oct 28, 2016 8:01 am

Hello Britney:

As you have learned already, there is supposed to be a zero M-spike in a healthy person. However, low levels of the M-spike are usually asymptomatic, and potentially in many people never advance further. It is certainly possible, maybe probable, that your pain issues in your back have nothing to do with your M-spike.

As you will learn in your research, myeloma is very "tricky". It is not like the flu or the measles, where for most people it runs its course in the same way. There are a lot of nuances and differences from person to person. In a very low percentage of cases, symptoms do kick in at low or even zero M-spike (nonsecretory myeloma). So to establish whether your back and limb pains have anything to do with the M-spike, I think you should get the imaging that would be typically done, an MRI or a PET/CT scan. My guess is that you would rule out involvement from the early stage multiple myeloma, but that would be what the test would be for.

Secondly, also in consideration of the pain you reported, I would think you should get the bone marrow biopsy to "baseline" where you are at. Simply due to that low of an M-spike, many doctors would not even bother. At your young age, and in consideration of the pain you have reported, I think it would be appropriate to "baseline" you situation. However, based solely on the low M-spike, I would expect a plasma cell percentage in the area of 5% to 10%, which is consistent with MGUS. If it turned out to be higher, then your doctor would address it.

Hopefully you never advance to smoldering, though it is possible. If you ever did advance to smoldering and it was considered "high-risk" smoldering, then there are clinical trials going on right now with various different treatments, to try and head it off at the pass. I believe you very likely have a lot of time until it happens (if at all it happens) to do your research.

Good luck to you.

[britsmitOH]

Re: Young mother with M-spike (M-protein)

by britsmitOH on Fri Oct 28, 2016 9:14 am

I found out literally three days ago about the M-spike. I will find out today what day I go back for all the followup work to characterize the M-protein.

I am sure my rheumatologist is forwarding me to the next step and doctor (as has every doctor before him, but they've kept me as well, I have an interesting medical case). Right now I have a small team of doctors that have been phenomenal, I am loving my care at Cleveland Clinic! They've been awesome advocates!

The pain I have is suspected to be related to Ehlers-Danlos syndrome. I think they ran an elec­tro­phoresis just for safe measure. I also had some slightly "off" tests. My calcium is high, plate­lets are high, white blood count is high, absolute neutrophil was high as well. And some of my other stuff is a little low. But my numbers weren't so high or low that they were a flag on its own. I think with the M-protein it is a concern because it looks to be the beginning of some­thing.

I am also aware that this could be another disorder / cancer entirely. I am hoping to have more answers soon. Today my rheumatologist will be going over my next steps. They all have been so great at getting me in QUICK to see the next specialist.

Thank you for the well wishes!