In way of background, IgM kappa MGUS, 1 to 2 g/l (0.1 to 0.2 g/dL). Two years (since 35 years old). Plasma cells 1% and no free light chains.
When I was diagnosed, I placed my hopes on the word "unknown significance". I thought MGUS could turn out to be insignificant (for example it could just be some inflammation or something less significant). As such my first response was to try and proof its insignificance.
After many conversations with various specialist I am not any closer to understanding what is meant by "unknown significance". Reading the response from Dr Kapoor, my understanding is now as follows:
1. If you had a low spike for a SHORT period of time the MGUS could turn out to be insignificant.
2. Should you have MGUS for a longer period, the unknown significance rather refers to the period of time prior to it developing into something more significant.
I am very simplistic person and do not understand all the technical terms. I am with a very good specialist, but the term "unknown significance" still remains an "unknown" to me.
Forums
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Just diagnosed with MGUS - what should I expect?
My update is that while the oncologist confirmed MGUS from my blood work, none of the other tests support any evidence of multiple myeloma – no bone lesions, but mention was made of deterioration of spine, hips, knees. She seemed happy with this report. I am grateful for this.
She will be monitoring me every 6 months and also suggested I see a rheumatologist because of a " slightly" positive ANA.
Meanwhile my neuropathy has become MUCH worse since the bone marrow biopsy. Is this coincidence? This is actually where I started – at a neurologist trying to find the cause of this pain which started in feet legs arms and now has progressed to full body. She did mention something about the immune system attacking the myelin around the nerves. It seems every time I go to a doctor they tell me something else to terrify me.
Where do I go now? Back to the neurologist? Seek out a rheumatologist?
The nerve pain is excruciating, especially from the shoulder blade to the elbow. Walking is difficult, and I still have no answers and no relief, just more to stress over.
Does any one else have neuropathy with this, or is it a separate problem.? What do you do?.
My primary doctor feels that, while the biopsy itself wouldn't cause this, the stress of it and the waiting and situation itself could exacerbate any other condition.any thoughts would be appreciated.
She will be monitoring me every 6 months and also suggested I see a rheumatologist because of a " slightly" positive ANA.
Meanwhile my neuropathy has become MUCH worse since the bone marrow biopsy. Is this coincidence? This is actually where I started – at a neurologist trying to find the cause of this pain which started in feet legs arms and now has progressed to full body. She did mention something about the immune system attacking the myelin around the nerves. It seems every time I go to a doctor they tell me something else to terrify me.
Where do I go now? Back to the neurologist? Seek out a rheumatologist?
The nerve pain is excruciating, especially from the shoulder blade to the elbow. Walking is difficult, and I still have no answers and no relief, just more to stress over.
Does any one else have neuropathy with this, or is it a separate problem.? What do you do?.
My primary doctor feels that, while the biopsy itself wouldn't cause this, the stress of it and the waiting and situation itself could exacerbate any other condition.any thoughts would be appreciated.
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Micki, have you ever had a PET scan of the area of pain ?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Just diagnosed with MGUS - what should I expect?
I had the x-rays from the oncologist and several MRI's. Neurologist says this is a pinched nerve. He wants me to take a course of steroids, which I will most likely reject. Just do PT.
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
I had MRIs of my entire spine in July. They were ok other than several herniated disks. Last week my neurologist sent me to a rheumatologist as he wanted me to be tested for autoimmune diseases. He ran blood work on ten tubes of blood and for some reason the results were emailed to me, not the doctor.
Anyway, here it is almost midnight and I am freaking out. The IgG was apparently ok (1160) but the IgG subclass 2 said this:
IGG SUBCLASS 2 - 563 mg/dL (124 - 549 mg/dL)
REFERENCE INTERVAL: Immunoglobulin G Subclass 2 - Access complete set of age- and/or gender-specific reference intervals for this test in the ARUP Laboratory Test Directory.
Is this something to be concerned over? The rheumatologist isn't in until Friday. The hematologist appointment is not till the end of November. Apparently most of the other blood work seemed ok from what I can see. Nothing out of range. I don't even know why he did this test!
Does anyone have any insight as to this? Thanks.
Anyway, here it is almost midnight and I am freaking out. The IgG was apparently ok (1160) but the IgG subclass 2 said this:
IGG SUBCLASS 2 - 563 mg/dL (124 - 549 mg/dL)
REFERENCE INTERVAL: Immunoglobulin G Subclass 2 - Access complete set of age- and/or gender-specific reference intervals for this test in the ARUP Laboratory Test Directory.
Is this something to be concerned over? The rheumatologist isn't in until Friday. The hematologist appointment is not till the end of November. Apparently most of the other blood work seemed ok from what I can see. Nothing out of range. I don't even know why he did this test!
Does anyone have any insight as to this? Thanks.
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Micki529 - Name: Micki529
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 67
Re: Just diagnosed with MGUS - what should I expect?
Hi Micki,
IgG2 is used to identify autoimmune diseases such as Lupus or Sjogren's. Yours is only barely elevated, so I wouldn't stress too much about it anyway
I have multiple sclerosis (MS) and MGUS (so an autoimmune combo), and my hematologist says that as long as the MS stays under control, the MGUS will probably be controlled as well. Hopefully that offers some comfort.
IgG2 is used to identify autoimmune diseases such as Lupus or Sjogren's. Yours is only barely elevated, so I wouldn't stress too much about it anyway
I have multiple sclerosis (MS) and MGUS (so an autoimmune combo), and my hematologist says that as long as the MS stays under control, the MGUS will probably be controlled as well. Hopefully that offers some comfort.
Re: Just diagnosed with MGUS - what should I expect?
I was told I have MGUS too. I'm 45, and I'm getting no answers other then blood tests and wait 
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ajw
Re: Just diagnosed with MGUS - what should I expect?
Hi ajw,
Regular 'blood tests and wait' seems to be the general approach with MGUS. But it shouldn't stop you finding out more about it if you feel you want to.
When I was told I had MGUS, my instinct was to ignore it and pretend it wasn't happening. I convinced myself I was better off not knowing. That was ok for a couple of months, but it was always at the back of my mind. So at the next visit to my hematologist-oncologist, I decided to garner as much information as I could. I asked lots of questions and got lots of answers, and I now feel better for knowing exactly where I stand.
My attitude towards my diagnosis has flipped completely to the point where I'd rather know how my MGUS is progressing so that, if and when the time comes for them to take action, they can do it at the earliest possible time.
It doesn't make me feel any less anxious come the time for my blood tests, but I do feel I'm better off for keeping myself informed.
That's how I deal with it anyway, ask lots of questions.
Regular 'blood tests and wait' seems to be the general approach with MGUS. But it shouldn't stop you finding out more about it if you feel you want to.
When I was told I had MGUS, my instinct was to ignore it and pretend it wasn't happening. I convinced myself I was better off not knowing. That was ok for a couple of months, but it was always at the back of my mind. So at the next visit to my hematologist-oncologist, I decided to garner as much information as I could. I asked lots of questions and got lots of answers, and I now feel better for knowing exactly where I stand.
My attitude towards my diagnosis has flipped completely to the point where I'd rather know how my MGUS is progressing so that, if and when the time comes for them to take action, they can do it at the earliest possible time.
It doesn't make me feel any less anxious come the time for my blood tests, but I do feel I'm better off for keeping myself informed.
That's how I deal with it anyway, ask lots of questions.
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johant - Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 41
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