[rickb74Participant]

Hello. I’m sorry to be one of those people who join a message board asking for guidance on a medical issue when its entirely reasonable for you guys to say “ask the doctor!” but I’m struggling a bit here and would appreciate your input. (I have asked my GP the question I’m about to put to you, but she’s very young and inexperienced and is waiting for the Hematologist to respond to her – it’s been 2 weeks however)

I’m 50 years old, male. Since the start of the year I’ve been experiencing some strange neurological issues – pins and needles, muscle twitching so I went to the GP and they ran some basic blood and clinical tests and all came back fine. Then around September time I noticed a few scattered petechiae type spots on my arms, legs and chest. Back to the docs with more focused blood tests. I had read that these spots might be present in various types of cancers, Myeloma being one, so it had me concerned.

The results are:
Differentials (neutrophils etc) all normal
Complete blood count all normal apart from platelets fluctuating a bit: 131 up to 155, 191 and now 138
Special proteins:
IgA: Normal 2.2
IgG: Normal 11.1
IgM: Abnormal 4.3
Serum Total Protein: Normal 73 g/l
Serum Albumin51g/l
Bence Jones protein: None found
Urine Albumin/Creatine ratio: Normal
Serum Calcium: Normal
Serum C Reactive Protein level: Normal
Serum Creatinine: Normal

Obviously the stand out result is the raised IgM.

These results were sent to the consultant hematologist at UCH London (apparently he specializes in Myeloma and other cancers) and he responded to my GP with…

“He has no paraprotein so I am not concerned about the raised IgM (likely inflammtory), I think it sounds likley post viral”

Now I’ve done a bit of reading around and I’m confused about the Paraprotein comment. I know the presence of Paraprotein is a red flag for MM, but according to what I’ve read online, it’s detected by an SPEP test. Which I don’t think they did with me?

But I’ve also read that if Paraprotein was found in the blood (in the globulins), it would mean the overall Total Protein would be raised? Is that true in your experience? So I assume the Haematologist is basing his ‘no paraprotein’ comment on the Total Protein result?

I hope all that makes sense! My overall question is, do I need a further SPEP test or is what I already have sufficient?

Many thanks in advance

Rick

[rabbitParticipant]

Hi Rick,

I’m sorry to be one of those people who join a message board asking for guidance on a medical issue when its entirely reasonable for you guys to say “ask the doctor!…”

Don’t worry, Rick. You are among friends here. The average GP sees myeloma cases once or twice in a working lifetime, and some of us have experience of them not having a clue, misdiagnosing etc.

There is an obvious downside that whilst we on this forum know a bit about myeloma from experience, we won’t generally know much about other conditions.

There is a clue in your platelet count. The normal range is 150 to 450, so yours are not just erratic: they are on the low side. That can have a range of causes, from an infection, to a vitamin B12 deficiency, to overdoing alcohol, to other possible diagnoses.
https://northeast.devonformularyguidance.nhs.uk/referral-guidance/eastern-locality/haematology/thrombocytopenia-low-platelets

Low platelets can cause dark patches on the skin, (although this happens more often when the platelet count is much lower.

On the high IgM: this is outside the normal range, but not sky high. Sky high readings – in the hundreds or thousands – are more typical with myeloma https://pmc.ncbi.nlm.nih.gov/articles/PMC3736855/
Again, an infection can cause such ‘slightly high’ readings.

“He has no paraprotein so I am not concerned about the raised IgM (likely inflammtory), I think it sounds likley post viral”

The lack of proteins is a strong indicator that you do not have myeloma. The haematologist is pretty definitive on this (although, for full disclosure, a few people have myeloma without paraproteins).

In short, I think that the tests already done are sufficient.

Regards
Rabbit

Caveat: I am not a haematologist, but a patient (with very low platelets)

[rickb74Participant]

Thank you so much for replying rabbit, and for the welcome, it’s very kind.

Yes I agree the haematologist is pretty definitive, which is reassuring, but I suppose that is my query. Is the total protein score enough to be so definitive without a spep test? I keep reading different things online (from reliable websites it seems) hence my confusion.

Best

Rick

[rabbitParticipant]

Hi Rick,

“Bence Jones protein

Tests can detect paraproteins in the blood and urine if you have myeloma. One part of the paraprotein is called the light chain. This is also known as the Bence Jones protein. The body gets rid of the light chain in the urine. Urine tests are a way of detecting these light chains to diagnose and monitor myeloma.”

https://www.cancerresearchuk.org/about-cancer/myeloma/getting-diagnosed/tests-myeloma

You didn’t have any Bence Jones proteins.

Regards
Rabbit

[rickb74Participant]

Thanks again Rabbit. I did look into that as well and all the stats I found seem to say that only 50%-80% of people diagnosed with MM have Bence Jones protein in their urine, so I was under the impression it wasn’t definitive as a test unfortunately.

[rabbitParticipant]

Hi Rick,

With only slightly elevated IgM levels, which can have several other causes, and no other abnormal results, it seems very unlikely that you have myeloma.

Regards
Rabbit

[rickb74Participant]

Thank you Rabbit, for the insightful, kind and patient responses, it’s much appreciated. I’ll update on any new test results.

If anyone else has any insight like Rabbit’s that would be also appreciated.

All the best to everyone.

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