Hello,
Smoldering myeloma is considered asymptomatic, so I was just wondering how patients are diagnosed?
If there are no qualifying symptoms, what were the causative factors that lead to your SPEP and the discovery of your monoclonal protein?
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: How were you diagnosed with smoldering myeloma?
Hi there! Often times it's discovered by a fluke!
For me, I was having numbness in my hands while I sleep. I thought it was left over from pregnancy-induced carpal tunnel syndrome 10 years prior. But when I was tested for it, the EMG was negative. So the neurologist recommended a brain and cervical MRI.
There was a lesion found in the cervical spine which prompted a referral for myeloma. Blood tests were done, and the rest is history.
The ironic thing is that the lesion isn't even related to the myeloma! So for me, this was definitely a fluke!
For me, I was having numbness in my hands while I sleep. I thought it was left over from pregnancy-induced carpal tunnel syndrome 10 years prior. But when I was tested for it, the EMG was negative. So the neurologist recommended a brain and cervical MRI.
There was a lesion found in the cervical spine which prompted a referral for myeloma. Blood tests were done, and the rest is history.
The ironic thing is that the lesion isn't even related to the myeloma! So for me, this was definitely a fluke!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: How were you diagnosed with smoldering myeloma?
Same for my mom ... Random routine checkup led to discovery of high sed rate.
That arised suspision and further exams. Monoclonal protein was found and BMB was done and revealed 50% PC.
Sigh ... Keep your fingers crossed. And keep hoping. It may never progress to multiple myeloma.
Maro
That arised suspision and further exams. Monoclonal protein was found and BMB was done and revealed 50% PC.
Sigh ... Keep your fingers crossed. And keep hoping. It may never progress to multiple myeloma.
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: How were you diagnosed with smoldering myeloma?
Hello,
Thank you for your replies! Please keep them coming. For me, it was frequent and recurring infection that led to testing.
@Maro, did your Mom have full body MRI or PET? That is a high percentage of plasma cells in the marrow. I wouldn't accept a SMM diagnosis without this type of diagnostic imaging to rule out multiple myeloma.
Regards,
Jhorner
Thank you for your replies! Please keep them coming. For me, it was frequent and recurring infection that led to testing.
@Maro, did your Mom have full body MRI or PET? That is a high percentage of plasma cells in the marrow. I wouldn't accept a SMM diagnosis without this type of diagnostic imaging to rule out multiple myeloma.
Regards,
Jhorner
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: How were you diagnosed with smoldering myeloma?
About 3 years ago I developed a peripheral neuropathy in my feet. I was worked up extensively and it was concluded that it might be due to the statin medication I was taking for high cholesterol. He was going to order a protein electrophoresis and decided not to.
One year ago, I developed bilateral shoulder and neck pain. An MRI showed bilateral brachial plexus neuritis. My neurologist ordered a protein electrophoresis and the diagnosis was made.
The shoulder and neck pain resolved but the peripheral neuropathy has persisted although mild and intermittent and well controlled with R-alpha lipoic acid and N-acetyl cysteine.
One year ago, I developed bilateral shoulder and neck pain. An MRI showed bilateral brachial plexus neuritis. My neurologist ordered a protein electrophoresis and the diagnosis was made.
The shoulder and neck pain resolved but the peripheral neuropathy has persisted although mild and intermittent and well controlled with R-alpha lipoic acid and N-acetyl cysteine.
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fetalsono - Age at diagnosis: 66
Re: How were you diagnosed with smoldering myeloma?
Jhorner,
Yes, my mom did a full body xray and MRI. No lesions were found.
Now she must simply do blood tests every 3 months in the hope that it never develops.
Interesting thing is that it is believed she has been smoldering for over 2 years.
Yes, my mom did a full body xray and MRI. No lesions were found.
Now she must simply do blood tests every 3 months in the hope that it never develops.
Interesting thing is that it is believed she has been smoldering for over 2 years.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: How were you diagnosed with smoldering myeloma?
Routine physical that showed just a slightly elevated globulin level in my test results. My family doc was smart enough to follow up with an IFE and SPEP and then sent me off to a specialist once he got the results.
I have never felt any worse for the disease and would still not know I had it unless I happened to get that physical and had a sharp doc on my side.
I have never felt any worse for the disease and would still not know I had it unless I happened to get that physical and had a sharp doc on my side.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How were you diagnosed with smoldering myeloma?
Mine was due to pain and numbness in both hands and forearms. Instead of referring me to an ortho for carpal tunnel, my PCP ordered an SPEP test. I was shocked, and suspect that something in previous bloodwork tipped him off. CRP elevated and platelets low for some time. I'll probably never know, as my PCP isn't talking.
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: How were you diagnosed with smoldering myeloma?
My trips to the doctor started with the most annoying twitching eye that wouldn't stop. I finally went to the eye doctor, who asked lots of questions where I shared my other two complaints - extreme fatigue and headaches. She referred me to another doctor who could not find an explanation, but sent me to Mayo and they connected all the dots.
The eye twitching, headaches and fatigue cleared up just by getting back to a healthy diet and exercise. I wonder how some of you feel now. I seem to have new aches and pains, but a clean PET scan / CT. Is it my age or because I am smoldering. Anyone want to share?
The eye twitching, headaches and fatigue cleared up just by getting back to a healthy diet and exercise. I wonder how some of you feel now. I seem to have new aches and pains, but a clean PET scan / CT. Is it my age or because I am smoldering. Anyone want to share?
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Smittie - Age at diagnosis: 54
Re: How were you diagnosed with smoldering myeloma?
I was diagnosed after an incidental, unrelated finding. My internist was doing blood work to see if I had celiac disease (which I do not).
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heatherlib - Name: heather
- Who do you know with myeloma?: self
- When were you/they diagnosed?: may 2014
- Age at diagnosis: 52
10 posts
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