[sara82Participant]

Hi everyone,

I hope this isn’t an intrusion – I haven’t been diagnosed with myeloma or anything related, but I am seeing a doctor soon for rib and upper back pain that I’ve had for quite some time now, intermittently. My medical history is such that I’m concerned about MGUS and myeloma: I’ve had Hepatitis C all my life (I’m 32) and I’m aware that studies have shown it to be a risk factor.

I just have a few questions below for anyone who was diagnosed with myeloma, and especially with MGUS or SM. I’ve never had any specialised testing for any of these conditions, but wondering if something would necessarily show up in my blood work. I do have very low ferritin, and RBC on the lower end of normal. My Potassium is low and recently lymphocytes came back at 13%, so low – though I was ill at the time. Everything else is basically normal:

1) Did any of you who experienced bone pain prior to and up to diagnosis, have normal standard blood work at diagnosis or prior, despite the pain?

2) Does bone pain typically result in a detectable raise in calcium levels at the same time or very soon after?

3) Can bone pain linger intermittently for over a year at relatively the same threshold, or does it usually get rapidly worse over a short period of time – even in MGUS or SM?

I’ve been having what feels like dull bone pain in my ribs (front and back), and in certain spots on my spine and upper back between and on my shoulder blades, for over a year now. I’m familiar with body aches, but my rheumatism feels very different – like a hot and deep burning, where as this is a dull and localised pain in different places in my ribs and back.

I asked a doctor on a medical forum and he said rheumatoid arthritis can cause bone pain, which surprised me. Someone else then mentioned connective tissue disease. It needs investigating and I’ll be seeing a rheumatologist soon.

I just wondered if anyone could shed some light on the questions above, while I wait to see a doctor.

Thanks a lot for your input.

• This topic was modified 10 years, 6 months ago by  sara82.

[meganjaneParticipant]

Hi Sara,

I can’t really help with most of your questions as my husband Phil was diagnosed with Myeloma not MGUS or SM. Phil has bone pain from the damage caused by Myeloma and this has not gone away completely after treatment so he has ongoing pain but one of the things the doctors are tracking to help decide when treatment is needed again is the calcium levels. If the calcium levels rise in his blood it may be an indication that the bones are breaking down again if the Myeloma is active. I do not know if calcium levels differ for those with MGUS and SM as if the Myeloma is not yet active I would think it would be at normal levels?

I hope the doctor is able to answer your questions but you could also call the Myeloma Infoline (the number is at the top of this page) and Ellen should be able to answer some of your questions re: MGUS and SM.

Megan

[graemeandrewarthaParticipant]

Hi Sara

Interesting question. I was mis-diagnosed for a while until I actually got into the main hospital where when it was recognised. Then I couldn’t fault the treatment. I had never heard of it just thinking it was a muscle strain! !!.

1) No blood’s prior to main hospital visit then specific bloods requested.

2) Not sure about the calcium levels.

3) Muscle pain intermittent for a number of months then bang intense pain top of left leg hence start of the doctors visit.

As can be seen from my original introduction Myeloma was not on their original thoughts. Myeloma can be anywhere, leg for initial consultation then after tests all the other places found. But I only get leg pains still.

Not sure if this is what you needed but as very few doctors see Myeloma it is one to be considered.

Regards.

Graeme

 

[bandityogaParticipant]

Hi Sarah

My husband had back pain which was mild initially, went to gp sent away with pain killers. Took 7 months to be diagnosed, by which time he was in considerable pain. We went privately for an MRI scan and they found a huge mass on his spine. He did have bloods taken but they didn’t show anything sinister as he has light chain myeloma and it shows in a simple urine test.

If in doubt, ask for an x ray or scan.

Maureen

[sara82Participant]

Thank you all for taking the time to reply.

I sometimes feel foolish for thinking about MGUS or myeloma – but with the underlying Hep C, and the onset of now chronic rib and upper back pain about a year ago, albeit dull and intermittent, it’s been on my mind. Any sustained pressure on my ribs (like leaning over the couch to say hi to someone on skype) and my ribs are in agony. I will be seeing a rheumatologist soon.

I’ve had blood tests recently (as I do every year for HCV) and also urine tests, as I have kidney stones:

– Would protein in the urine show up even without a test being done for it?
Thanks again. I will follow up here with any developments, either way.

[sara82Participant]

Oops, that last question wasn’t clear, sorry:

I meant could protein show up in a simple urine test even when specific tests to look for them haven’t been ordered?

Thanks again.

[sara82Participant]

Hello,

I finally discussed my symptoms with a rheumatologist, and he agreed that myeloma is worth screening for, given my medical history, so he ordered a SPEP along with other tests, and is sending me for a bone scan.

He said intermittent pain is a more encouraging sign, though I’ve read that barring fracture, intermittent pain can accompany myeloma and can be from bone marrow infiltration. Is this actually true?

Has anyone experience intermittent pain for some time before diagnosis?

Thanks again

[graemeandrewarthaParticipant]

Hi Sara

I had symptoms for over a year. Always after driving. Get out of the car and I would ache around the top of the leg area. Assumed that it was muscle,  walked around for a few minutes then it would disappear so carried on thinking it was a minor strain. No point in going to the doctor as it always went away. It was only later when it did not go away that I started to see my GP.

[sara82Participant]

Thanks for your reply – I’m sorry to hear that. I can’t say I find it encouraging… I asked my rheumatologist if it could be Costochondritis and he said unlikely, as that’s usually just the chest and front ribs. He also didn’t think it sounded arthritic.

Did you have any abnormalities in routine blood work prior or at the time of your diagnosis, or was it only specialized tests that confirmed it i.e. SPEP?

 

[mhnevillParticipant]

Hi Sara

Hope you manage to get an answer about MM soon. It must be very worrying having it hanging over you.

PP blood readings aren’t done as routine. I think this is because of cost! Also it takes about 10 days to get the results, unlike others which they can do immediately.

Do let us know how you get on.

Very best wishes.

Mavis

[sara82Participant]

Thank you Mavis.

Sometimes I feel crazy for even worrying about this disease – but when I get these pains in my ribs, and in my back, shoulder blades and spine (yesterday they were quite painful, deep and unpleasant), and also in other places like my hip and ankle bone – my worry increases again.

I’m at least “glad” this rheumatologist took my concern seriously (I’d rather know and deal with a problem than not know and sit worrying) – I told him I had Hep C all my life (32 years) and that I was having these pains, and also neuropathtic type pains (burning sensations  on my skin, and painful burning in my right foot etc) and he suggested a bone scan and talked about testing for cryoglobulin and protein etc – so I then voiced my myeloma/MGUS concern.

I’ll report back once I get all the results next week. He ordered a Technium bone scan, which is apparently not ideally for myeloma workups (that’s puzzled me) and a SPEP with some other blood work. No UPEP though. I’ll have to discuss it all further with him when I see him. If I’m going to rule this out, I want to do it completely.

Thanks for your support. I wish all of you who are struggling with this illness a successful treatment and good health.

[docmikeParticipant]

Dear Sara.
I am consultant gastroenterologist (docmike).In 2005 I sustained a needlestick and contracted hepc(genotype 3) and was succesfully treated with pegifn/ribavirin. Retrospectively i did not have mgus at that time because i had some serum samples available to retest . In 2008 I was diagnosed with smouldering myeloma .
Yes cryoglobulinaemmia could explain your symptoms apart from rib pain . I hope you have neither because then you need to get rid of hepc whatever and i know where to get you support from fellow heppers ( do you know chrissy davey/pixie). You are not alone .
Mike

[sara82Participant]

Dear Mike,

Thanks for sharing that – I’m sorry to hear about your HCV and SM. It’s my lifelong history of Hep C (32 years of chrnoc virus) that promoted me to investigate for MM with these odd pains. I just received the first batch of results back to rule out MM, which were all negative thankfully, and I was tested for Cryo which was also negative.

I have yet to have a UPEP done (but am going to do so with referal to a hem/onc) along with the correct imaging of the areas of dull pain I’m having. I had a tech99 bone scan done which was largely normal, but I know this is not advised imaging for MM.

Results so far:

My SPEP is normal and says “no myeloma band detected” which I’m of course very relieved about. My rheumatologist didn’t order a UPEP though, but agreed to refer me to a hematologist for this and the remainder of tests to rule multiple myeloma out. I also didn’t see any indication that an Immunofixation was ordered, but perhaps this wasn’t necessary it no M spike was seen? All my other blood work with the rheumy came back normal, so no rheumatoid arthritis or autoimmune to explain these pains I’m having.

One thing that was abnormal in the SPEP was Beta, which was low (it was 0.54, range 0.74 – 1.06). Any idea what this means? I googled and all I found was poor nutrition! That’s definitely not the case with me.

Something else that has concerned me is that independent blood work that I had done a month ago in April with an unrelated doctor, for my annual Hep C follow up, showed that under Bone Profile, my Globulin was marked as elevated (38 g/L). I read that this can be elevated in both liver disease and myeloma, so this coincidence slightly worried me. I looked back through past lab work for HCV and never had high Globulin before. Should I share this with the hematologist?

At any rate, I’ll be seeing him soon for the remainder of tests (UPEP etc) and for the correct imaging of the areas where I have dull pain (now daily, but still intermittent – ribs, front and back, back, spine and shoulder blades, and also iliac hip bone and ankle bone).

The tech99 Bone Scan came back clear, except for two hot spots of increased tracer uptake in my two toes, which the rheumatologist wasn’t worried about investigating further. I’ll ask for the UPEP and free lite chain assay to rule non-secretory myeloma and scans of where I have pain. Am I missing anything else? Thanks to all of you for putting up with my questions.

[sara82Participant]

p.s. does everyone with light chain myeloma have impaired kidneys? – because my creatinine was normal. I assume this is what the UPEP would look for.

[HelenParticipant]

Hi Sara
Not everyone with light chain myeloma has kidney problems. I have it and have no bone or kidney damage and have had more problems with the drug effects than the disease so far.
Helen

[Author]

Posts