Right now, my brain is flooded with questions, so I'm hoping I offer the right information to get the answers I need.
For a little background, I have been experiencing bone pain for a significant amount of time (probably 2+ years). In that same time period, I've had two surgeries, broken an ankle (3rd time with same ankle), then had the ankle surgically repaired last summer. After the surgery, I never seemed to be able to get my strength back. In December, I came down with what we thought was a virus, but six days later I was unconscious. ER doctor did CT scan, MRI and bloodwork, but could not figure out what was happening. She referred me to a neurologist. Among all the other things he did, he included a spinal tap to check for MS. When he got the original results back in mid-March, he received everything except for the MS results, so he scheduled for me to come back in this week.
In the meantime, we have also noticed increased levels of calcium in my routine bloodwork and have been looking into parathyroid disorders.
When we met with my neurologist on Thursday, he told us that I definitely did not have MS, but that I had a strange result he and his colleagues did not know what to do with. Instead of oligoclonal protein markers, both my blood serum and CSF showed monoclonal protein markers. He said that since it was not something they had seen that we would just continue to monitor it every year to see if it changed.
Being an obsessive researcher, I came home and started googling the terminology and got a bit concerned with what I was reading.
My first understanding was that based on the results, it was possible that I had MGUS. I didn't worry too much about that, although it was a little disconcerting. But then I came across the link to multiple myeloma and the diagnosis criteria. When I had originally read it, I thought all 4(5) criteria of CRAB(I) needed to be met; but on reading it further, it looks like if even one of those criteria is met that it is likely multiple myeloma.
Now I'm not sure how to proceed.
1) Am I reading/understanding all of this data right?
2) If I am, do I need to schedule an appointment with an oncologist?
3) Assuming that 1 & 2 are yes, does anyone know how other autoimmune disorders (specifically adrenal disorders) could affect treatment?
Thanks in advance for your patience with me and for your answers.
Wendy
Forums
7 posts
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AddyGirl - Name: Wendy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 10, 2012
- Age at diagnosis: 42
Re: Hyper-Imagination or Reality?
Hi Wendy,
You've really been through a lot, haven't you?!!! I hope when this is all done and over with that the problem turns out to be something a lot less serious than myeloma.
I believe these are the usual criteria for diagnosing whether someone has myeloma:
Presence of an M-component in the blood and/or urine plus clonal plasma cells in the bone marrow and/or a documented clonal plasmacytoma (tumor), plus one or more of the following that can be attributed to an underlying plasma disorder:
Calcium levels elevated (>11.5 mg/dl)
Renal / kidney insufficiency (creatinine >2 mg/dl)
Anemia (which can cause tiredness) (hemoglobin <10 g/dl or 2 g/dl <normal)
Bone disease (lytic lesions or osteopenia)
Also, since it could be helpful, here is a summary of the differences between MGUS, smoldering myeloma, and multiple myeloma:
MGUS - Serum monoclonal protein level <3 g/dL, bone marrow plasma cells <10%, and absence of end-organ damage, such as lytic bone lesions, anemia, hypercalcemia, or renal failure, that can be attributed to a plasma cell proliferative disorder.
SMM (also referred to as asymptomatic multiple myeloma) - Serum monoclonal protein (IgG or IgA) level ≥3 g/dL and/or bone marrow plasma cells ≥10%, absence of end-organ damage, such as lytic bone lesions, anemia, hypercalcemia, or renal failure, that can be attributed to a plasma cell proliferative disorder.
Multiple myeloma - Bone marrow plasma cells ≥10%, presence of serum and/or urinary monoclonal protein (except in patients with true nonsecretory multiple myeloma), plus evidence of lytic bone lesions, anemia, hypercalcemia, or renal failure that can be attributed to the underlying plasma cell proliferative disorder.
So, if you look at the blood work you've had done recently, you may be able to get an initial idea if you fall into any of these categories.
HOWEVER, probably the best thing to do is make an appointment with your usual physician (an internist maybe), explain what's been happening, and discuss whether you should have more thorough bloodwork done or even some additional xrays/MRIs.
I don't think it's the right time yet (and hopefully never) to go to an oncologist. You first need to figure out with your usual doctor what's really going on.
Hope this helps.
You've really been through a lot, haven't you?!!! I hope when this is all done and over with that the problem turns out to be something a lot less serious than myeloma.
I believe these are the usual criteria for diagnosing whether someone has myeloma:
Presence of an M-component in the blood and/or urine plus clonal plasma cells in the bone marrow and/or a documented clonal plasmacytoma (tumor), plus one or more of the following that can be attributed to an underlying plasma disorder:
Calcium levels elevated (>11.5 mg/dl)
Renal / kidney insufficiency (creatinine >2 mg/dl)
Anemia (which can cause tiredness) (hemoglobin <10 g/dl or 2 g/dl <normal)
Bone disease (lytic lesions or osteopenia)
Also, since it could be helpful, here is a summary of the differences between MGUS, smoldering myeloma, and multiple myeloma:
MGUS - Serum monoclonal protein level <3 g/dL, bone marrow plasma cells <10%, and absence of end-organ damage, such as lytic bone lesions, anemia, hypercalcemia, or renal failure, that can be attributed to a plasma cell proliferative disorder.
SMM (also referred to as asymptomatic multiple myeloma) - Serum monoclonal protein (IgG or IgA) level ≥3 g/dL and/or bone marrow plasma cells ≥10%, absence of end-organ damage, such as lytic bone lesions, anemia, hypercalcemia, or renal failure, that can be attributed to a plasma cell proliferative disorder.
Multiple myeloma - Bone marrow plasma cells ≥10%, presence of serum and/or urinary monoclonal protein (except in patients with true nonsecretory multiple myeloma), plus evidence of lytic bone lesions, anemia, hypercalcemia, or renal failure that can be attributed to the underlying plasma cell proliferative disorder.
So, if you look at the blood work you've had done recently, you may be able to get an initial idea if you fall into any of these categories.
HOWEVER, probably the best thing to do is make an appointment with your usual physician (an internist maybe), explain what's been happening, and discuss whether you should have more thorough bloodwork done or even some additional xrays/MRIs.
I don't think it's the right time yet (and hopefully never) to go to an oncologist. You first need to figure out with your usual doctor what's really going on.
Hope this helps.
Re: Hyper-Imagination or Reality?
Ricardo gives a very good definition of the 3 main categories of Myeloma. What I disagree with him about is just going to your primary doctor. Have you had any skeletal x-rays, MRI or PET/CT scans to see why you have been having bone pain for so long? With what the neurologist said I don't think it would be a bad decision to see a hematologist. I would look for someone who is knowledgeable about Myeloma. What can it hurt? At the very least the oncologist can find out that no, you don't have Myeloma. If, in fact you do, then you are in the right place to start possible treatment.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Hyper-Imagination or Reality?
Hi Wendy!
Spinal tap? OUCH!! what a trooper you were.
You ask:
1) Am I reading/understanding all of this data right?
2) If I am, do I need to schedule an appointment with an oncologist?
3) Assuming that 1 & 2 are yes, does anyone know how other autoimmune disorders (specifically adrenal disorders) could affect treatment?
From what you wrote, you do understand that it is only essential to have one of the CRAB criteria. Typically, though if you have just one there will be other tests that are not in the normal range as well such as SPEP and/or B2 microglobulin and a bone marrow biopsy/aspirate will indicate the percent of monoclonal B cells.
I agree with Nancy, I would seek out a myeloma expert in your area, not just an oncologist. multiple myeloma is not a predominant hematological cancer and thus many oncologists lack expertise about the disease and that would not be a good choice. While they will not necessarily do harm you want the best therapy choices not those that are only standard of care as there are better choices.
Spinal tap? OUCH!! what a trooper you were.
You ask:
1) Am I reading/understanding all of this data right?
2) If I am, do I need to schedule an appointment with an oncologist?
3) Assuming that 1 & 2 are yes, does anyone know how other autoimmune disorders (specifically adrenal disorders) could affect treatment?
From what you wrote, you do understand that it is only essential to have one of the CRAB criteria. Typically, though if you have just one there will be other tests that are not in the normal range as well such as SPEP and/or B2 microglobulin and a bone marrow biopsy/aspirate will indicate the percent of monoclonal B cells.
I agree with Nancy, I would seek out a myeloma expert in your area, not just an oncologist. multiple myeloma is not a predominant hematological cancer and thus many oncologists lack expertise about the disease and that would not be a good choice. While they will not necessarily do harm you want the best therapy choices not those that are only standard of care as there are better choices.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Hyper-Imagination or Reality?
hI Wendy, I hope you can get to the right treatments for your symptoms. If you can get to see a haematologist, or a haematological oncologist, they could better analyze your bloodwork than could a neurologist. Then if you did happen to have multiple myeloma (which of course I hope you don't!), you could take it from there for discussing treatments. Reading the Beacon is a really good way to learn a lot in a short period of time about multiple myeloma. There also may be a specialist in your area that deals primarily with multiple myeloma patients, as Suzierose suggests. It is a rare disease, comprising of only 1% of cancer diagnoses, and thus many practising physicians have never seen a case of it!!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hyper-Imagination or Reality?
Neurologists do not know anything about multiple myeloma, or blood monoclonal protiens. You need to ask for a referral to a hematologist.
It is impossible to say if you have multiple myeloma or not over the 'net.
In my own case I was being followed by a MS neurologist for over a year, and kept telling me there was nothing wrong with me, but when I collapsed at work, and could not stand without fainting I went to the ER I was diagnosed with multiple myeloma a week later and admitted to the hospital for treatment.
My story is long, and involves many "specialists" who kept telling I was "fine" untill I ended up with the MS clinic since I fit the the criteria (age, sex etc). In my case I got very ill (severe anemia and something called Hyperviscocity) before I was finally diagnosed
It is impossible to say if you have multiple myeloma or not over the 'net.
In my own case I was being followed by a MS neurologist for over a year, and kept telling me there was nothing wrong with me, but when I collapsed at work, and could not stand without fainting I went to the ER I was diagnosed with multiple myeloma a week later and admitted to the hospital for treatment.
My story is long, and involves many "specialists" who kept telling I was "fine" untill I ended up with the MS clinic since I fit the the criteria (age, sex etc). In my case I got very ill (severe anemia and something called Hyperviscocity) before I was finally diagnosed
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Anonymous
Re: Hyper-Imagination or Reality?
Based on what you have said, I would get an appointment with a hematologist/onocologist. Multiple myeloma appears to be difficult to recognize for many doctors but is easy to diagnoise for an oncologist/hematologist. The average patient sees their primary care physician three times before a correct diagnosis is made. I have met patients who took more than six months before a correct diagnosis was made. I am not a doctor but nothing you said leads me to rule out the possibility of having Multiple Myeloma. I really hope it is not.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
7 posts
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