I have just had CMV [cytomegalovirus] hepatitis. My liver and white blood cell counts went really high. When my private consultant had discharged me from his care, he wrote a letter to my GP explaining what had been wrong with me and finished the letter saying I had a low level paraprotein level which he thinks is due to MGUS and that my blood should be tested again in 6 months. My main concern is that my GP doesn't even know what MGUS is, so I'm not even sure he will know what he is looking for.
My question to you all is that 3 years ago I had a scan due to some head pain problems and they discovered my vertebrae 5 & 6 are wearing. This didn't seem to concern anyone. They just said if I had more problems to ask for a consultant appointment.
From what I have read, a few of you have disc wearing problems. Could my vertebrae wearing be due to MGUS? And I've possibly had it for a while with no obvious symptoms.
Is there a chance this low paraprotein result could just be a reaction to all my other counts being so high and would it be possible for the levels to be back to normal by the time my bloods are done in January?
Forums
Re: Why were you tested for MGUS?
@ Henrietta or Beacon,
May I suggest you repost this as a new discussion. You have some pointed questions that won't likely get answered on this thread.
May I suggest you repost this as a new discussion. You have some pointed questions that won't likely get answered on this thread.
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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: Why were you tested for MGUS?
I was tested due to results from blood tests that I had when suffering with severe rib pain. Was diagnosed with multiple sclerosis and MGUS.
Re: Why were you tested for MGUS?
Thank you Jhorner, I have started a new discussion with my question (see "May have MGUS - have correct blood tests been requested?").
Re: Why were you tested for MGUS?
I had signed up to be a plasma donator at a local plasma donation center. They routinely run a SPEP to be sure you have adequate plasma protein to be donating, and my SPEP showed a spike. My PCP researched it and discovered the implications, referred me to an oncologist, who followed up with more lab studies and a bone marrow biopsy.
Thus my journey with MGUS began 10 years ago. My level fluctuates off and on, but so far, so good. Interesting to read the comments re: facial symptoms - I have had this for several years and no one has identified a cause. Recently had a cervical spine fusion, which was scary, but no signs of multiple myeloma!
Thus my journey with MGUS began 10 years ago. My level fluctuates off and on, but so far, so good. Interesting to read the comments re: facial symptoms - I have had this for several years and no one has identified a cause. Recently had a cervical spine fusion, which was scary, but no signs of multiple myeloma!
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rorando
Re: Why were you tested for MGUS?
I had allergy tests in 2005 for wheat and dairy intolerance and part of the results showed I had kappa type IgM MGUS with an M-spike of 4g/l [0.4 g/dL]. IgM 11.50g/l ,IgA1.24g/l, IgG 9.1g/l. This was followed up with a bone marrow biopsy and other blood and urine tests.
My most recent results are IgM kappa 15g/l, IgG 5.8g/l, IgA 0.8g/l
Protein studies kappa free light chains 53.7, lambda free light chains 6.3, K/L ratio 8.52
BMB plasma cells 3%
Most of these recent ones state they're abnormal, but I'm not sure what it means. I don't see the specialist now till January next year.
My most recent results are IgM kappa 15g/l, IgG 5.8g/l, IgA 0.8g/l
Protein studies kappa free light chains 53.7, lambda free light chains 6.3, K/L ratio 8.52
BMB plasma cells 3%
Most of these recent ones state they're abnormal, but I'm not sure what it means. I don't see the specialist now till January next year.
Re: Why were you tested for MGUS?
Hi rorando, I also had a cervical fusion c4-c7 in December 2010 and L4-5/L5-S1 many years ago.
Note I have 3 bulging thoracic discs and also have just had a neuro-modulator inserted in my lower spine to help with my chronic back problems.I have also been reading and wondering whether any of my problems are MGUS related, especially when I read that IgM MGUS can cause neuropathy.
Note I have 3 bulging thoracic discs and also have just had a neuro-modulator inserted in my lower spine to help with my chronic back problems.I have also been reading and wondering whether any of my problems are MGUS related, especially when I read that IgM MGUS can cause neuropathy.
Re: Why were you tested for MGUS?
I had been told I was anemic at a general physical four years previous to diagnosis of MGUS. I changed my diet to be very iron rich. When I went back for a physical last year, I was told I was still anemic. I was referred to a rheumatologist; who knew they are also oncologists!
I presented with bad lower back pain, lack of energy and all over aching. When first diagnosed we thought I was full blown. I was told to get my affairs in order. It was a very scary time. Further testing over a three month period found that I was truly MGUS.
I changed my diet, cut out gluten and dairy. I no longer ache all over, I have energy and am living a healthy life.
I went to a physical therapist and found I had hip flexor issues that have been causing the back pain. The back pain is now non existent most days with an occasional flare up. Yoga is a part of my life, it has also helped quite a bit.
One year after diagnosis, I feel like I've been given a second chance and very blessed.
I presented with bad lower back pain, lack of energy and all over aching. When first diagnosed we thought I was full blown. I was told to get my affairs in order. It was a very scary time. Further testing over a three month period found that I was truly MGUS.
I changed my diet, cut out gluten and dairy. I no longer ache all over, I have energy and am living a healthy life.
I went to a physical therapist and found I had hip flexor issues that have been causing the back pain. The back pain is now non existent most days with an occasional flare up. Yoga is a part of my life, it has also helped quite a bit.
One year after diagnosis, I feel like I've been given a second chance and very blessed.
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Long4Tahoe - Name: PennyP
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2013
- Age at diagnosis: 51
Re: Why were you tested for MGUS?
Due to numbness in two fingers, I underwent nerve testing, and then several blood tests. It was determined that I have some sort of autoimmune problem, nothing definite yet.
Anyway, an m-spike was detected (low), and it was determined that I have IgM kappa MGUS with a free light chain ratio of 27. (That's the thing that bothers me, not the very low m-spike.)
My two fingers are still numb (it's been a year!), and now they plan on doing an MRI of the neck and are referring me to a rheumatologist for the autoimmune stuff. I'm basically very healthy, so, this is getting tiresome. I continue to run, swim, eat healthy, etc.
Anyway, an m-spike was detected (low), and it was determined that I have IgM kappa MGUS with a free light chain ratio of 27. (That's the thing that bothers me, not the very low m-spike.)
My two fingers are still numb (it's been a year!), and now they plan on doing an MRI of the neck and are referring me to a rheumatologist for the autoimmune stuff. I'm basically very healthy, so, this is getting tiresome. I continue to run, swim, eat healthy, etc.
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NC Deb - Name: NC Deb
- When were you/they diagnosed?: January 2014 MGUS
- Age at diagnosis: 56
Re: Why were you tested for MGUS?
This is splendid, the response to this post! Thank you all so very much for adding to it! And please continue to do so for anyone who sees this.
I am also interested if any of you later discover what the cause of your paraprotein is, or if you discover what the cause of your initial presenting complaint is.
I'd love to be "cured" of my fatigue one day
I am also interested if any of you later discover what the cause of your paraprotein is, or if you discover what the cause of your initial presenting complaint is.
I'd love to be "cured" of my fatigue one day
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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