Hello
I was recently diagnosed with an IgM kappa MGUS in August 2014 after a few months of fatigue and bone pain (43 year old male in the UK). I am just in the process of getting a second opinion from another hematologist, as I've found small traces of protein in my urine.
I am being monitored every 6 months via a watch and wait program, but wanted to ask what supplements would be considered prudent to take. I have been seeing a naturopath and she's recommended a whole host of stuff in heavy dosage (d-ribose, acetyl carnitine, coq10, magnesium chloride, calcium, vit k, vit c, vit b3, vit d. clean greens, curcurmin), and she now wants to add in magnesium injections for my ongoing bone aches and fatigue. Think it was magnesium sulfate.
My question is are these injections appropriate (have read that people with kidney problems should avoid and given I've found protein in my urine, it's a bit of a worry), and, secondly, do you think that I'm taking too many supplements?
Would appreciate help / support with this matter.
Thank you
Simon
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Re: IgM MGUS - supplements and magnesium injections
Simon,
IgM myeloma is somewhat rare. When you see your second hematologist, you may want to discuss whether this might instead be an early stage of Waldenstrom macroglobulinemia (WM) or another condition associated with the presence of IgM paraproteins. Did they confirm your original IgM MGUS diagnosis via a bone marrow biopsy?
Also, have you had a full body xray or PET/CT as part of your MGUS diagnosis? Before trying to address your bone pain with magnesium sulfate injections, I would want to first understand if lytic lesions or some sort of other bone destruction caused by your underlying disease was the reason for your pain. If it is determined that you have bone destruction due to your disease, magnesium injections are not the answer.
BTW, what is your calcium level? A high calcium level may provide a clue as to whether you have any disease-related bone destruction going on (but note that you may still have disease-related bone destruction going on even with a normal calcium level).
In any case, before getting in any deeper with supplements, I would suggest first following through with the second hematologist.
Also, while I am a believer in supplementation (I am smoldering and take quite a few supplements), I clear all my supplements through both my GP and oncologist / hematologist.
Hope this helps.
IgM myeloma is somewhat rare. When you see your second hematologist, you may want to discuss whether this might instead be an early stage of Waldenstrom macroglobulinemia (WM) or another condition associated with the presence of IgM paraproteins. Did they confirm your original IgM MGUS diagnosis via a bone marrow biopsy?
Also, have you had a full body xray or PET/CT as part of your MGUS diagnosis? Before trying to address your bone pain with magnesium sulfate injections, I would want to first understand if lytic lesions or some sort of other bone destruction caused by your underlying disease was the reason for your pain. If it is determined that you have bone destruction due to your disease, magnesium injections are not the answer.
BTW, what is your calcium level? A high calcium level may provide a clue as to whether you have any disease-related bone destruction going on (but note that you may still have disease-related bone destruction going on even with a normal calcium level).
In any case, before getting in any deeper with supplements, I would suggest first following through with the second hematologist.
Also, while I am a believer in supplementation (I am smoldering and take quite a few supplements), I clear all my supplements through both my GP and oncologist / hematologist.
Hope this helps.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: IgM MGUS - supplements and magnesium injections
Thanks Multibilly, appreciate the sound advice as always.
I think you're right and I will ring up and postpone those magnesium injections for now. Thank you.
In terms of WM, I have also given that some thought (as I have amyloidosis), so I will definitely bring those up in my appointment with the second hematologist next week. I asked a similar question on here last week about WM (link to discussion), and one of the kind doctors mentioned that it was generally a slow developing disease so, given I've only had this condition for approx 7 months, thought that that was unlikely.
My general doctor thinks that I have chronic fatigue and the MGUS is asymptomatic and could have sat dormant in my body for years prior, but I kind of feel that all started with a bad virus at the start of 2014.
Am really struggling to understand which symptoms should be attributed to the IgM MGUS and which could be something else (i.e., early stages or something else or CFS). in the last few days I've had shin pain, rib pain, sore ankles, elbows, tweaks in the back of my legs and occasional pins and needles in my fingers. I'm also feeling like I have a low grade temperature that comes and goes. It's all very puzzling ...
I think you're right and I will ring up and postpone those magnesium injections for now. Thank you.
In terms of WM, I have also given that some thought (as I have amyloidosis), so I will definitely bring those up in my appointment with the second hematologist next week. I asked a similar question on here last week about WM (link to discussion), and one of the kind doctors mentioned that it was generally a slow developing disease so, given I've only had this condition for approx 7 months, thought that that was unlikely.
My general doctor thinks that I have chronic fatigue and the MGUS is asymptomatic and could have sat dormant in my body for years prior, but I kind of feel that all started with a bad virus at the start of 2014.
Am really struggling to understand which symptoms should be attributed to the IgM MGUS and which could be something else (i.e., early stages or something else or CFS). in the last few days I've had shin pain, rib pain, sore ankles, elbows, tweaks in the back of my legs and occasional pins and needles in my fingers. I'm also feeling like I have a low grade temperature that comes and goes. It's all very puzzling ...
Re: IgM MGUS - supplements and magnesium injections
Simon,
BTW, when I mentioned "WM or another condition associated with the presence of IgM paraproteins", I was implying amyloidosis or CLL as other potential disease candidates. But I didn't want to freak you out with too many possibilities
I'm not a doc, but I believe that the amyloidosis diagnosis may account for the MGUS being of an IgM type ... at least that is what I seem to recall in my readings.
Best of luck to you.
BTW, when I mentioned "WM or another condition associated with the presence of IgM paraproteins", I was implying amyloidosis or CLL as other potential disease candidates. But I didn't want to freak you out with too many possibilities
I'm not a doc, but I believe that the amyloidosis diagnosis may account for the MGUS being of an IgM type ... at least that is what I seem to recall in my readings.Best of luck to you.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
4 posts
• Page 1 of 1