Dear David- I just got a diagnosis of MGUS (monoclonal gammopathy of undetermined significance) this week. I’ve been called a hypochondriac, weird, and all kinds of names because for 6 months now I’ve had some bizarre symptoms.
No one has addressed except my Primary Care Physician, just this week. He’s been working on it , due to my symptoms:
- 75 lb weight loss within the last 6 months,
- 2 leg bloodclots,
- bone pain.
- foot pain-
When I tried to explain my foot pain I think the doctor thought I was really a quack. WHEN he put them all together he guessed what I had is MGUS.
I’m going to see a doctor who specializes in blood cancer. Is it normal I’m not afraid? I think I’ll do what he tells me and hope for the best. Bizarro
Hi Bizarro- Let me begin by stressing that you are not a hypochondriac, weird, a quack, etc. Pre-myeloma (SPB, MGUS, SMM) all are said to be asymptomatic yet symptoms are common.
I will link studies identifying blood, skin, joint, bone, etc. symptoms for MGUS patients below. In addition, your PCP is to be commended for identifying your symptoms as MGUS.
MGUS is difficult to diagnose. I can’t tell you how many people have written me to explain months or even years of unidentified symptoms like yours followed by a diagnosis of either MGUS or even full multiple myeloma.
The payoff for diagnosing your MGUS is that you can identify your risk of a full myeloma diagnosis and undergo evidence-based, non-conventional therapies to reduce your risk of myeloma. I will post the Pre-myeloma nutrition guide below.
Your question about not being afraid is interesting. To be honest, most people I work with who have been diagnosed with pre-myeloma (MGUS, SMM) experience a host of negative emotions- fear, sadness, depression, etc.
While seeing a hematologist who is also an oncologist, is a good first step, if you ever to progress to full myeloma I encourage you to work with a myeloma specialist. Myeloma is a rare cancer. And only 10% of blood cancers. Few oncologists, other than specialists, have the needed experience.
I will supply you with names and locations if you need it.
Questions for you to ask you hematologist-oncologist are:
- What is the difference between
- Single Plasmacytoma of Bone, (If you are SPB, be sure to ask if your diagnosis is certain)
- Monoclonal Gammopathy of Undetermined Significance,
- Smoldering Multiple Myeloma and Multiple Myeloma?
- Am I symptomatic or asymptomatic? What does that mean?
- Are any of my tests high or low aka above or below the normal ranges?
- What do my diagnostic tests indicate? How often should I be tested?
- Is my kidney or bone health being affected?
- Am I high risk or low risk? What is my risk of progression to Multiple Myeloma?
- What are my treatment options?
It seems a though you are a step ahead of the normal newly diagnosed MGUS patient. Pre-myeloma and even myeloma stage 1 both have a much better prognosis than the myeloma stage 2 or 3.
You didn’t ask me Leona but I have to say something. It is usual for oncologists to tell MGUS patients that “not to worry” or to “watch and wait.” Though I don’t think you need to worry, I do think you will benefit if you
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“It has been reported that patients with plasma cell dyscrasias are at increased risk for VTE. This risk is further increased by the treatment of this condition, particularly in multiple myeloma patients. However, although patients with MGUS ordinarily do not receive any specific treatment, they are still at increased risk of VTE.21 This risk has been thought to be due to ongoing clonal plasma cell activities, including secretion of proinflammatory cytokines such as interleukin-6 (IL-6) and tissue necrosis factor.22…
“Monoclonal gammopathy associated with dermatological manifestations are a well-recognized complication. These skin disorders can be associated with infiltration and proliferation of a malignant plasma cells or by a deposition of the monoclonal immunoglobulin in a nonmalignant monoclonal gammopathy.
These disorders include:
- POEMS syndrome,
- light chain amyloidosis,
- Schnitzler syndrome,
- scleromyxedema and
- TEMPI syndrome.
This article provides a review of clinical manifestations, diagnostics criteria, natural evolution, pathogenesis, and treatment of these cutaneous manifestations.
“Besides checking the blood for changes in M proteins, your doctor will look for certain symptoms that could indicate the disease is advancing. These symptoms include: