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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Wondering if I have MGUS or smoldering myeloma

by Sara on Tue Apr 29, 2014 12:35 pm

Hello folks,

I have a few questions after reading through this thread, specifically regarding MGUS and smoldering myeloma.

- Did any of you who experienced bone pain prior to and up to diagnosis, have normal blood results, despite the bone pain i.e. no protein in the blood or elevated calcium etc?

- Does bone pain related to MGUS/smoldering myeloma always result in a raise in calcium levels? If so, does it typically show up very soon after the pains begin, or can it come later?

- In MGUS or smoldering myeloma, can bone pain linger for over a year at relatively the same threshold, or does it usually get steadily worse over a short time?

I ask all this because 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 my shoulder blades, for over a year now. I have chronic Hep C (since a transfusion at birth), so I'm familiar with body aches, but my rheumatism has never felt like this - this feels like a deep, dull bone ache that comes and goes, almost daily now - which is why I'm finally going to look into it. The reason I haven't investigated it until now, is because when it began I was getting over a Vitamin D deficiency - which I know can cause similar pains.

Since then I've also had problems with very low ferritin (I have a heavy menstrual cycle), but my Vitamin D is now normal as are my calcium levels, so I'm about to speak to a doctor about this pain to find out what's causing it. I did ask a doctor on a medical forum and he said rheumatoid arthritis can cause bone pain, which surprised me. I always thought that was more joint pain, which this isn't. Someone else then mentioned connective tissue disease. It need investigating.

I just wondered if anyone could shed some light on the questions above, because I have read that Hep C has been linked to myeloma in some studies. I'd be very grateful for your input while I wait to see a doctor.

Sara

Re: Wondering if I have MGUS or smoldering myeloma

by Multibilly on Tue Apr 29, 2014 3:11 pm

Sara,

Have you had all the standard tests for multiple myeloma? If you were originally diagnosed with MGUS and have since developed bone pain, this is one of the key flags for getting re-tested.

Did you ever get a PET/CT or BMB?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Wondering if I have MGUS or smoldering myeloma

by Sara on Tue Apr 29, 2014 5:04 pm

Hi Multibilly,

I've never had any tests done for myeloma, and have not been diagnosed with MGUS or myeloma - I am scheduled to see a doctor in a little over a week, so I will ask about this pain and whether I should perhaps be screened for it, because of the Hep C. It may be something like RA, though the intermittent and now quite regular pain is in my ribs and upper back, spine area and shoulder blades - sometimes also the boney part of my shoulder, so nothing that feels joint related.

I just wonder if anyone can shed light on these questions I have, before I finally see a doctor about the issue, because I know that MGUS and smoldering myeloma can be more elusive to diagnose.

Thanks for your response.

Sara

Re: Wondering if I have MGUS or smoldering myeloma

by Multibilly on Tue Apr 29, 2014 5:43 pm

Ooops. I mixed up folks on that thread.

Can't really help you with your questions. But note that MGUS is not an "elusive" disease to diagnose ... it's just elusive if your doc doesn't know to test for it ;-)

You can ask your doctor for an SPEP, UPEP and IFE (and maybe a Freelite Chain assay) to see if you have a monoclonal gammopathy of some sort. All these tests are cheap and easy to do.

If your doc objects to doing these tests, you could ask for just an IFE. This won't tell you how much monoclonal protein you may have (if you did have MGUS), but it will tell you with pretty high certainty if any is present ... you can then take it from there.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Wondering if I have MGUS or smoldering myeloma

by Sara on Wed Apr 30, 2014 4:18 am

Thank you Multibilly,

I will speak to the doctor about these tests and what he thinks is reasonable.

If anyone else can chime in on my questions in the the first post above, I'd be super grateful.

Sara

Sara

Re: Wondering if I have MGUS or smoldering myeloma

by Sara on Fri May 02, 2014 8:33 am

So I'm waiting for a call back regarding an available slot to see a rheumatologist, hopefully next week.

Can anyone help me out with these questions below in the meantime? I'd be very grateful for any feedback, however brief:

1) Did any of you who experienced bone pain prior to and up to diagnosis, have normal blood results at diagnosis, despite the pain i.e. no protein in the blood or elevated calcium etc?

2) Does bone pain related to MGUS or SM always result in a raise in calcium levels?

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

Sara

Re: Wondering if I have MGUS or smoldering myeloma

by Sara on Sun May 11, 2014 4:07 am

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

Sara

Re: Wondering if I have MGUS or smoldering myeloma

by darnold on Mon May 12, 2014 5:15 pm

Hi Sara. I had intermittent pain for nearly a year before my myeloma diagnosis. About a year before the diagnosis, I had pain in my ribs, which I thought was a pulled muscle -- after all, I had just stretched to clean the top-most tiles in my bathroom, so a pull was likely. It went away after about 6 weeks, confirming my conclusion that it was a pulled muscle. It would twinge from time to time for months afterward. Almost a year later, intermittent became permanent, sending me on the search that led to my diagnosis.

darnold
Name: Dana Arnold
Who do you know with myeloma?: self
When were you/they diagnosed?: May 2009
Age at diagnosis: 52

Re: Wondering if I have MGUS or smoldering myeloma

by Sara on Tue May 13, 2014 3:18 am

Thanks for replying Darnold.

My rheumatologist took my request for myeloma screening seriously at least. He did say that he thought intermittent pain was encouraging, because it's usually "constant" as he put it with this illness, but I've read many stories that say otherwise.

He ordered a SPEP and a bone scan, along with a host of other blood work, but I've just been reading that there's "smoldering myeloma", "light chain myeloma" and "non-secretory" etc, so I'm anxious that if we are investigating this to rule it out once and for all, that every stone should be overturned, otherwise I'll remain anxious about misdiagnosis.

At the end of my appointment, he asked me if I wanted to begin with treatment like physio right away or to wait for the results - that kind of threw me: I mean if there's the slightest chance that my bones are weak from a cancer you're screening me for, should I really be going to have pyshio??

Anyway, I'll come back here with results when they're out. I'm having a bone scan on Sunday (a Dex scan I think with a tracer injected) - blood work will take two weeks to come back.

I may request tests for the other types too.

Sara

Re: Wondering if I have MGUS or smoldering myeloma

by Sara on Tue May 13, 2014 3:20 am

I should add that I'm only 32, so I know it's less common in very young people, but it's my lifelong hepatitis C that made me want to investigate these pains.

Sara

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