Tagged: MGUS myeloma smouldering biopsy
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I’m hoping to get some perspective from others with experience of MGUS/myeloma, particularly around ongoing symptoms despite reassuring investigations so far.
Background / timeline
Summer 2023
• I began developing a number of ongoing symptoms, including significant unexplained bone pain, fatigue, night sweats and weight loss.
• I was diagnosed with IgG kappa MGUS in August 2023 after just turning 36.
• My paraprotein has slowly risen since diagnosis. My bloods were last checked in March 2026, when it was 13 g/L.
• Because the symptoms had already started around the time of diagnosis, I have always wondered whether there could be any connection, while also understanding that MGUS itself is usually asymptomatic.
2024/2025 – pushing for further investigation
As the symptoms continued, I became increasingly concerned that they were being treated as separate issues rather than looked at alongside the MGUS.
My NHS haematologist has generally been quite dismissive of my concerns and has repeatedly felt that further investigation was not necessary.
In July 2025, after asking for a second opinion and continuing to push for a bone marrow biopsy, the second haematologist agreed that one should be carried out.
The biopsy showed 8% clonal plasma cells in the iliac crest.
That result then led to further imaging being arranged.
October 2025 – whole-body MRI
A whole-body MRI was arranged in October 2025 following the bone marrow biopsy.
There were several administrative and scheduling problems around the scan.
• The request had initially been changed from whole-body imaging to spinal imaging and I had to query this to have the whole-body request reinstated.
• When I attended on 13 October, I had been given the wrong appointment time, so I was told they would do as much as possible in the time available and bring me back to finish the scan.
• I was only in the scanner for around half an hour on that first occasion.
• I then returned approximately a week later and, from the information I have, the second scan appears to have been predominantly spinal imaging.
• No myeloma-type focal bone lesions were reported.
Because of how the appointments happened, I have always been unsure how comprehensively the rest of the skeleton was assessed.
Despite the reassuring imaging, the symptoms continued.
2026
Over the following months I continued to experience:
• persistent unexplained bone pain, including rib and spinal/back pain;
• fatigue;
• night sweats;
• previous significant unexplained weight loss;
• headaches;
• intermittent facial tingling/numbness;
• and later a small, hard, immobile lump/prominence on the skull near the crown, which feels as though it arises from the bone rather than the scalp.
The skull prominence is palpable to me and has also been felt by my husband, sister and a doctor. It is small, roughly pea-sized in area rather than pea-shaped, and has at times been tender. I feel it may have very slowly increased in prominence, although obviously that is subjective.
May/June 2026 – neurological symptoms and hospital admission
I developed a particularly severe prolonged headache with facial tingling and vomiting, which eventually resulted in hospital admission.
I had a CT head with contrast approximately three weeks before the MRI described below. Nothing concerning was identified.
During the admission I repeatedly explained the wider history of IgG kappa MGUS, the 8% clonal plasma cells on bone marrow biopsy, unexplained bone pain, night sweats, fatigue and the palpable skull lump.
Blood tests were performed, including vitamin/iron-type investigations, which I was told were normal. I specifically asked for an SPEP/paraprotein test to be repeated as blood was already being taken.
A brain MRI was then performed, initially without contrast followed by contrast imaging.
The initial report ruled out things such as a brain tumour, clot and obvious evidence of MS, and the final neurological assessment was also reassuring regarding intracranial disease.
However, one detail I think is important is the wording on my June discharge paperwork.
It did not actually say that radiology had visualised the lump and found it benign. It said that the radiologists “did not visualise” the lump.
My understanding is also that they may not have been specifically directed to the exact area in the original referral paperwork, so I am not convinced that the palpable skull abnormality itself was ever properly correlated with the imaging.
At the time I was verbally told that radiology could not see anything worrying and one suggestion was that it could be an ingrown hair or pimple, although it feels hard, fixed and bony rather than superficial.
I was discharged without neurological follow-up, with migraine treatment and advice to ask my GP for a headache-clinic referral if medication was ineffective.
The headaches and intermittent facial tingling have continued.
Haematology review
Because I remained concerned that the symptoms were not being looked at as a whole, and because I have found my NHS haematologist quite dismissive, I arranged a private haematology consultation.
The private consultant’s view was that, with the symptoms I was describing, the main haematological question would be whether there was evidence of a lymphoproliferative disorder, rather than myeloma, and they recommended a CT scan.
They explained that in their experience myeloma would not typically account for symptoms such as the weight loss and sweats.
Based on my existing results, they did not feel that a repeat whole-body MRI or another bone marrow biopsy was currently indicated.
Regarding the skull lump, they advised that the skull had already been included on previous MRI and CT imaging without anything significant being reported and suggested that I ask to be shown the images through the NHS so the exact palpable area can be correlated with the scans.
They also said that the rib area would be assessed by the proposed CT.
So at the moment, both my NHS haematologist and the private consultant appear to feel that up-to-date whole-body imaging is not required, despite the ongoing symptoms and the fact that the last whole-body MRI was in October 2025.
Current symptoms
I am still dealing with unexplained symptoms rather than having a clear diagnosis.
One of the most troublesome areas currently is pain/tightness around the lower rib cage. It often feels less like pain in the rib itself and more as though something underneath the rib is being compressed.
It is particularly noticeable when bending forwards — for example bathing my children or picking something up — and feels almost like I am “squashing” something beneath the ribs. It reminds me of the pressure sensation of a baby’s foot being lodged under the ribs during pregnancy, although I am definitely not pregnant.
The area is somewhat tender when pressed but the discomfort is much more pronounced with bending. It does not seem clearly related to meals and is not particularly worse with deep breathing.
I have also noticed an occasional brief fluttering/vibration sensation in that area.
Separately, on around four occasions recently while lying at rest, my heart has suddenly felt as though it is racing and I have briefly felt as though I cannot quite catch my breath. These episodes have resolved spontaneously.
The bone/rib pain can wake me from sleep.
Where I am now
The overall picture is:
• symptoms beginning in summer 2023;
• diagnosis of IgG kappa MGUS in August 2023;
• paraprotein slowly rising over time and measuring 13 g/L in March 2026;
• persistent unexplained bone pain, fatigue, night sweats and previous weight loss;
• bone marrow biopsy in July 2025, which I had to push for after requesting a second opinion, showing 8% clonal plasma cells;
• whole-body MRI in October 2025, although carried out under unusual scheduling circumstances;
• ongoing and in some cases new symptoms since then;
• and a palpable skull prominence which the June discharge paperwork states radiology did not visualise, rather than confirming that it had been specifically assessed and found normal.
I fully appreciate that MGUS is common and that having MGUS does not mean that every symptom is related to myeloma. I am also aware that 8% plasma cells remains below the usual 10% threshold used in the definition of smouldering myeloma.
What I find difficult is that I have had symptoms for around three years, my paraprotein has gradually risen, there were 8% clonal plasma cells in the marrow sample, and yet the symptoms themselves remain unexplained.
Because the last whole-body MRI was in October 2025 and was carried out under unusual time/scheduling circumstances, I am struggling to understand why repeat or alternative imaging is considered unnecessary when the bone pain has persisted and changed. Especially as my maternal gran, her brother, and her cousin all died later in life due to multiple myeloma.
I am particularly interested in hearing from anyone who:
• had persistent bone pain or systemic symptoms while initially being monitored as MGUS;
• had a bone marrow percentage below 10% but continued to have concerning symptoms;
• had gradually rising IgG kappa paraprotein levels over several years;
• had reassuring blood tests or imaging before a cause was eventually identified;
• knows what would ordinarily prompt repeat whole-body MRI, PET-CT or low-dose whole-body CT in someone with MGUS and continuing bone pain;
• has experience of a palpable skull prominence where the radiology report did not actually confirm that the specific lump had been visualised;
• or had to seek a second opinion because they felt their symptoms were being dismissed.
I’m not looking for anyone to diagnose me. I’m mainly trying to understand whether others have had a similar experience and what questions it would be reasonable to ask next.
Hi , very comprehensive post and I can relate to these symptoms, especially bone pain and night sweats – trying to understand when MGUS becomes Myeloma is far from easy and I can relate to that !
You’ve had a comprehensive time with the docs so one thing I did was to check I was talking to myeloma specialists ( as distinct from general haematologists ) – there are some very good ones at Royal Marsden / UCC and other leading uk hospitals where they have myeloma specialists
You’ve mentioned Paraprotein and bone lesions (none ) so maybe worth looking at CRAB which has other things to measure on the journey from MGUS to Myeloma ( pasted below to help you go through this )- this might also help you understand why the Docs are on the fence with your diagnosis
The advances MGUS/ Myeloma care are astonishing so worth reading up on the latest – I use HealthTree.org which is an American site full of very helpful information – they have a ‘find your twin’ section if you don’t find you get What your looking for from UK respondents
Wishing you all the best
CRAB crieteria
The CRAB criteria are the classic set of end-organ damage features used to diagnose symptomatic multiple myeloma (as opposed to smoldering/asymptomatic myeloma). Each letter stands for a category of damage caused by the myeloma cells:
– **C – Calcium elevation**: Hypercalcemia, typically defined as serum calcium >0.25 mmol/L (>1 mg/dL) above the upper limit of normal, or >2.75 mmol/L (>11 mg/dL). Caused by bone breakdown releasing calcium into the blood.
– **R – Renal insufficiency**: Kidney impairment, typically creatinine >177 μmol/L (>2 mg/dL) or creatinine clearance <40 mL/min. Often caused by light chains (“Bence Jones protein”) damaging the kidney tubules.
– **A – Anemia**: Hemoglobin more than 2 g/dL below the lower limit of normal, or hemoglobin <10 g/dL. Caused by myeloma cells crowding out normal blood-forming cells in the bone marrow.
– **B – Bone lesions**: One or more osteolytic lesions on X-ray, CT, or PET-CT — the classic “punched-out” lesions, or pathologic fractures. Caused by myeloma cells stimulating bone-destroying osteoclasts.
If a patient with a clonal plasma cell disorder has one or more of these features, it’s classified as active/symptomatic multiple myeloma requiring treatment, rather than smoldering myeloma (which is monitored without treatment).
Note: the diagnostic criteria have since been expanded (the 2014 IMWG update added additional “SLiM” biomarkers — ≥60% clonal bone marrow plasma cells, involved:uninvolved light chain ratio ≥100, or more than one focal lesion on MRI — that also qualify as disease-defining even without CRAB features present).
This is general medical information — if this relates to your own or someone else’s diagnosis, it’s worth going over the specific numbers with the treating hematologist, since thresholds and staging can affect treatment decisions.
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