Hi everyone,
This is my first post on this forum. Earlier today I was diagnosed with Von Willebrand's disease, a mild and usually hereditary bleeding disorder that isn't usually all that big of a deal in and of itself.
The problem is that if it's not hereditary and just pops up out of nowhere it's generally due to an underlying cause. Pretty much all the potential benign causes have either been ruled out or just don't apply to me (hypothyroidism, cardiac issues, aspirin use, etc), which leaves a whole host of cancers as possible explanations.
Apparently multiple myeloma and Waldenstrom's macroglobulinemia (WM) are some of the conditions most frequently linked to acquired von Willebrand disease, and I actually do have a few symptoms that sound like they fit, so I was hoping I might be able to ask a very basic question. Please forgive my ignorance on the subject; I've only just been thrust into learning about this today:
Is having an abnormality in serum protein, albumin, globulin, or A/G ratio on a comprehensive metabolic panel almost a "prerequisite" of sorts for multiple myeloma or WM?
I realize that diagnosis of these disorders is based on the presence of specific kinds of abnormal proteins that require much more specialized tests, but I'm wondering if having normal levels of serum protein (7.7), albumin (4.7), globulin (3.0) and A/G ratio (1.5) would more or less rule out these conditions.
Again, please forgive my lack of knowledge and thank you for reading!
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Re: MGUS, multiple myeloma & Waldenstrom's prerequisites?
Hi btdyq5,
Sorry to hear about your diagnosis. What symptoms are you currently suffering from that makes you think that either disease may be a fit?
First off, I'm not a doc, so please check with yours. While an abnormal protein or globulin level can often be a tip off to having a plasma cell dyscrasia such as multiple myeloma or Waldenstrom's (it was in my case during a routine physical), you can have either disease with these levels being normal. This is because the disease can manifest in different ways and can affect different protein levels (immunoglobuins, free light chains, etc) in different patients. Alternatively, the impact of the disease on one's protein and globulin levels may not be sufficient to put them out of range at this time (as could be the case with something like MGUS).
In any case, the preliminary screening tests for these diseases are pretty simple and inexpensive. Your doctor would simply order the following:
Serum protein electrophoresis
Serum immunofixation
Serum free light chain assay
Quantified immunoglobulins (IgA, IgG and IgM).
It it's Waldenstrom's, then the results would likely point to a monoclonal "IgM" disorder, as opposed to a monoclonal IgG or IgA disorder.
Hope this helps a bit. Let us know how things turn out.
Sorry to hear about your diagnosis. What symptoms are you currently suffering from that makes you think that either disease may be a fit?
First off, I'm not a doc, so please check with yours. While an abnormal protein or globulin level can often be a tip off to having a plasma cell dyscrasia such as multiple myeloma or Waldenstrom's (it was in my case during a routine physical), you can have either disease with these levels being normal. This is because the disease can manifest in different ways and can affect different protein levels (immunoglobuins, free light chains, etc) in different patients. Alternatively, the impact of the disease on one's protein and globulin levels may not be sufficient to put them out of range at this time (as could be the case with something like MGUS).
In any case, the preliminary screening tests for these diseases are pretty simple and inexpensive. Your doctor would simply order the following:
Serum protein electrophoresis
Serum immunofixation
Serum free light chain assay
Quantified immunoglobulins (IgA, IgG and IgM).
It it's Waldenstrom's, then the results would likely point to a monoclonal "IgM" disorder, as opposed to a monoclonal IgG or IgA disorder.
Hope this helps a bit. Let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, multiple myeloma & Waldenstrom's prerequisites?
Thanks so much for your reply!
The symptoms I've had seem to coincide possibly a little bit with multiple myeloma, but some of the things I have going on seem to fit more with Waldenstrom's. I generally feel very well, but my symptoms include constant but quite mild petechiae for the past 6 months (which was actually the thing that led to the evaluation that resulted in the von Willebrand diagnosis), fairly constant lower back pain, Raynaud phenomenon and extreme sensitivity to cold in my fingers.
These symptoms in and of themselves never would have caused me to worry about multiple myeloma, Waldenstrom's, or anything else for that matter, but following the von Willebrand's diagnosis, I'm basically going through the list of possible causes of acquired von Willebrand's and trying to determine if anything going on with me fits.
When I asked my hematologist about these diseases she basically brushed me off and said there's no reason to suspect either multiple myeloma or Waldenstrom's because my all my prior bloodwork had been 100% normal – CBC with differential (no anemia), comprehensive metabolic panel, CRP, ESR, Prothrombin Time, Activated Partial Thromboplastin Time, D-dimer.
But I should emphasize that this was before my labwork had come back suggestive of von Willebrand's and she had basically told me she was certain that was going to come back normal as well. So now I don't really know what to think and won't be able to see her to ask questions for another month.
If I may ask 2 brief follow ups for anyone knowledgeable on the subject:
The symptoms I've had seem to coincide possibly a little bit with multiple myeloma, but some of the things I have going on seem to fit more with Waldenstrom's. I generally feel very well, but my symptoms include constant but quite mild petechiae for the past 6 months (which was actually the thing that led to the evaluation that resulted in the von Willebrand diagnosis), fairly constant lower back pain, Raynaud phenomenon and extreme sensitivity to cold in my fingers.
These symptoms in and of themselves never would have caused me to worry about multiple myeloma, Waldenstrom's, or anything else for that matter, but following the von Willebrand's diagnosis, I'm basically going through the list of possible causes of acquired von Willebrand's and trying to determine if anything going on with me fits.
When I asked my hematologist about these diseases she basically brushed me off and said there's no reason to suspect either multiple myeloma or Waldenstrom's because my all my prior bloodwork had been 100% normal – CBC with differential (no anemia), comprehensive metabolic panel, CRP, ESR, Prothrombin Time, Activated Partial Thromboplastin Time, D-dimer.
But I should emphasize that this was before my labwork had come back suggestive of von Willebrand's and she had basically told me she was certain that was going to come back normal as well. So now I don't really know what to think and won't be able to see her to ask questions for another month.
If I may ask 2 brief follow ups for anyone knowledgeable on the subject:
- Would all of those normal tests that I described above lower suspicion for multiple myeloma or Waldenstrom's?
- What does the back pain tend to feel like in myeloma? Mine is pretty sharp in nature and definitely dependent upon position and movement. It feels muscular for the most part, honestly. If I'm standing up and walking around I have no pain, nor do I have any pain when I'm lying down. It tends to crop up only when I'm sitting in certain positions and especially when I go to stand up from sitting in those certain positions. But then once up it goes away very quickly. I'm a weightlifter, so I'm very aware that this back pain could well just be due to lifting weights regularly, but now that myeloma and Waldenstrom's are on my mind I just can't totally write it off and would love to hear if this sounds characteristic of the kind of back pain that is characteristic of multiple myeloma.
Re: MGUS, multiple myeloma & Waldenstrom's prerequisites?
Your doc is probably right if all of the above tests came back as normal. However, both my GP and my onc are very accommodating if I request specific tests and have some documentation or good rationale to back up my request.
In the study link below, among 19 patients with a disorder recognized to be associated with acquired von Willebrand syndrome, 12 (52%) had a paraproteinemia (monoclonal protein in one's blood). Six (32%) had monoclonal gammopathy of undetermined significance (MGUS), 4 (21%) had Waldenstrom’s macroglobulinemia, and 1 each had non-Hodgkin’s lymphoma and multiple myeloma. That would be enough for either my GP or onc to go ahead and order some specific screening tests for these diseases if I simply asked them for these tests.
Kumar, S., et al, "Acquired von Willebrand's syndrome: A single institution experience," American Journal of Hematology, March 2003 (abstract, full text PDF)
I can't speak to what back pain feels like with multiple myeloma. I have asymptomatic smoldering multiple myeloma. But I'm sure others on the forum can chime in.
In the study link below, among 19 patients with a disorder recognized to be associated with acquired von Willebrand syndrome, 12 (52%) had a paraproteinemia (monoclonal protein in one's blood). Six (32%) had monoclonal gammopathy of undetermined significance (MGUS), 4 (21%) had Waldenstrom’s macroglobulinemia, and 1 each had non-Hodgkin’s lymphoma and multiple myeloma. That would be enough for either my GP or onc to go ahead and order some specific screening tests for these diseases if I simply asked them for these tests.
Kumar, S., et al, "Acquired von Willebrand's syndrome: A single institution experience," American Journal of Hematology, March 2003 (abstract, full text PDF)
I can't speak to what back pain feels like with multiple myeloma. I have asymptomatic smoldering multiple myeloma. But I'm sure others on the forum can chime in.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, multiple myeloma & Waldenstrom's prerequisites?
Thank you SO much for the information! If anyone else can speak to the characteristics of the back pain in multiple myeloma, I'd appreciate it. Thanks everyone!
Re: MGUS, multiple myeloma & Waldenstrom's prerequisites?
Back pain in myeloma is highly variable. As Multibilly would say, "I'm not a doc, but ... " myeloma bone pain can be quite intense. It does not usually dissipate and tends to be constant, although I'm sure there are people with myeloma who might disagree with me. I had rib, not back, pain from myeloma, although I have had back pain which is not myeloma related, based upon PET/CT studies.
The ribs were sore to the touch in many places, and movement exacerbated it. Almost as though someone had beaten me up.
If there is any question, I would definitely go for the full set of labs. If your doc won't do them, find another doc. It's your body and you have a right to get the tests you think you need, especially blood work, which poses no risks.
Good luck and please let us know how you make out.
The ribs were sore to the touch in many places, and movement exacerbated it. Almost as though someone had beaten me up.
If there is any question, I would definitely go for the full set of labs. If your doc won't do them, find another doc. It's your body and you have a right to get the tests you think you need, especially blood work, which poses no risks.
Good luck and please let us know how you make out.
Re: MGUS, multiple myeloma & Waldenstrom's prerequisites?
Thank you very much for your reply! That information was very helpful! I have also had some rib pain wherein my ribs were very painful to the touch, but I had forgotten about it because it occurred months ago and resolved without cropping up again. Hadn't even made the connection with multiple myeloma.
I fully intend to ask my hematologist to run the labs discussed in the previous post, but I'm a bit nervous because, multiple myeloma or not, I actually have reason to suspect that some monoclonal proteins will be present, because I have had to be vaccinated against rabies on 3 separate occasions (I've had remarkably improbable bad luck with accidental run-ins with bats!), most recently in December 2015, and according to some research that I've seen these vaccinations are known to cause a bit of a 'false positive' for at least 6 months.
I fully intend to ask my hematologist to run the labs discussed in the previous post, but I'm a bit nervous because, multiple myeloma or not, I actually have reason to suspect that some monoclonal proteins will be present, because I have had to be vaccinated against rabies on 3 separate occasions (I've had remarkably improbable bad luck with accidental run-ins with bats!), most recently in December 2015, and according to some research that I've seen these vaccinations are known to cause a bit of a 'false positive' for at least 6 months.
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