24 male - Myeloma screen clear but worried about symptoms

Hi 24mworried,

Welcome to the forum, although I’m very sorry for the reasons you have posted. I am not a medical expert, so please take everything I write with a pinch of salt. I think the problem here is that it is probably highly unlikely that you have myeloma, but I don’t think anybody is going to be able to give you a 100% guarantee unfortunately. If I were in your shoes and I wasn’t feeling well within myself, then I would keep pushing the medical teams to explore different tests to see if they can find out the source of the problem, but I might not push the specific myeloma tests for the time being. But ultimately, it’s a very personal choice what you decide to do next, and most importantly I hope you’ll begin to start feeling better within yourself really soon.

All the best

Greg

Thank you for the reply Greg,

My GP is ruling out Myeloma. I am, however, still worried about it being this. I asked him directly why an IFE and/or sFLC test was not done as these are more sensitive. As my SPEP was not abnormal (and urine) he informed me the lab would not run these tests as is protocol. So essentially they cannot do any more in regards to this. 

I have really quite severe neck pain developed over the past couple of weeks, and I am very very worried all of these aches and pains are Myeloma related. Really quite debilitating. But for now I'm a little stuck as what to do and the pains aren't going away.

Edit: They suggested I see a physio/chiro but I am a little worried that if I have MM it will do some irreversible damage. Does this sound silly?

Hi 24mworried,

This is such a tricky one. The chances are that you don’t have myeloma, but unfortunately it can’t be a 100% guarantee. I remember going to the physio for some sessions prior to being diagnosed, so I can’t say to you to not worry about things because that is the route I went down. If it is really troubling you, is there a way that you could pay to have the tests done privately? That would certainly help put your mind at rest?

All the best

Greg

My situation is almost reversed where I have gone the Myeloma route first - found to be negative and now they are suggesting physio which is reassuring I guess? My GP told me that the tests I have done pretty much would have picked up on something if anything (he said about 98% of MM's). 

Unfortunately I wouldn't have the funds to go private, and again, I know I would need a referral from my GP who has outright said I don't meet the criteria after testing. 

Edit: Did they diagnose you via blood tests initially like mine?

Hi 24mworried,

Myeloma was pretty much the last thing they thought of when it came to my diagnosis - it is “extremely rare” for anyone to get it under 40.

I had been picking up a lot of infections over one winter and had some pain in my back for which I went to the physio for a few months. I would have carried on but then over one weekend I got a massive blood clot in my left leg such that I couldn’t walk come Monday morning. 

I was admitted straight away and they did a whole lot of tests over about 10 days (a bit blurry now but there were CTs, MRIs, full body skeletal surveys). These uncovered lesions in my spine and pelvis. They thought it was metastatic cancer for a bit and I had a few sessions with the Cancer of unknown primary team, until after about 10 days something must have come up in a blood test so they did a bone marrow biopsy and that’s what confirmed myeloma.

So I definitely sympathize with you that myeloma is possibly the last thing that they think it is given your age, and in 99.9% of cases, it won’t be myeloma, but I guess I am proof that you can’t 100% eliminate the possibility.

I am not entirely certain what I would do if I was in your shoes. I would probably trust them that they don’t think it is myeloma, but I would push them hard to ask them what they think it is and how they are going to sort it out for you. Myeloma tends to be a slow growing cancer and staging doesn’t necessarily matter like it does in other cancers so if it does go undiagnosed for a bit I don’t think it will cause too much damage. But I’m really hoping that it isn’t myeloma and you find out what it is and get some treatment to sort it out really soon.

All the best

Greg

Do you know which blood test you may have had?

I brought up the possibility of having a CT/MRI to my doctor who again said if it's lesions you are worried about, then something would have shown on my x-rays and my calcium would be severely elevated (and not normal). 

I'm glad they have tested for Myeloma first as opposed to fobbing me off - I'm just 98% certain and that last 2% is causing me distress. Perhaps I just need to explore other avenues like you have mentioned? And let this one go.

Hope you are doing well Greg, all the best.

I am worried that they have missed a diagnosis of light chain myeloma, but I guess I have to trust my bence jones test. I did bring this up to my GP but he "100% assured" me that its been ruled out.

What does everyone think?