I am on my 8th year since my mgus diagnoses. I also have some questions that all mgus patients might ask themselves.. Here are just a few. ( I am in my 50"s)
1) post menopause osteoporosis or myeloma bone destruction?
2) myeloma urine protein or normal aging kidneys?
3) frequent infections or normal aging immunosuppression ?
4) myeloma spine lesions or degenerative spine
5) bone scan hot spots vs arthritis?
6) very low vit d levels or lack of sun
7) bone pain or muscle use
None of these issues have ever been addressed and are considered benign findings. I do yearly mgus labs but think they should maybe monitor mgus patients every 5 years or so.. IF
1) there m-spike stays the same after a certain many of years
2) do not present with any CRAB symptoms
3) no anemia
4) normal kidney functions
The yearly testing just puts emotional & financial burden on the mgus patient. Looking over your shoulder and questioning every ache & pain. Patient information is needed on what real symptoms to watch out for seems a much better option. My heart goes out to all you myeloma patients for all your on going labs, tests & procedures.. wish everyone the best.
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Re: MGUS and frequent monitoring
Dear Bad Blood,
First, I appreciate your nametag:) I too, am new to this forum and was compelled to reply because the similarities between us are uncanny. I am in my 50th year, but was diagnosed with MGUS 8 years ago. My doctor performed the SPEP and CBC annually and my M-spike had gradually reduced the first few years and then leveled off at .75 g/dl.
I was fine with the annual monitoring until I didn't feel good and was no longer able to exercise regularly because I was either sick, or suffered from exercise intolerance. Concerned and exacerbated, I asked my hematologist for a bone marrow aspirate. He declined indicating that my numbers hadn't changed and therefore it wasn't warranted, even though I had never had one before (that should have told me something about this doctor but I was admittedly ignorant) so I got a second opinion and when they ran the Immunoglobulins test I had supressed IgM and IgA. I ultimately had the bone marrow aspirate and biopsy done and was diagnosed with stage 1 Myeloma shortly thereafter.
So, this being said if you don't feel good for an extended period of time then you should request a complete evaluation. If your doctor will not oblige, I would get a second opinion. The SPEP is not indicative of disease progression with everyone and often enough it is the only tests doctors run when monitoring MGUS. I have a friend who was completely non-secretory.
I have all the symptoms you listed here, most of which the SMM is the causative factor, so my advice is to find a doctor that doesn't dismiss your symptoms and who is willing to complete a full evaluation.
Good Luck! Hope to see more of you here.
jbh
First, I appreciate your nametag:) I too, am new to this forum and was compelled to reply because the similarities between us are uncanny. I am in my 50th year, but was diagnosed with MGUS 8 years ago. My doctor performed the SPEP and CBC annually and my M-spike had gradually reduced the first few years and then leveled off at .75 g/dl.
I was fine with the annual monitoring until I didn't feel good and was no longer able to exercise regularly because I was either sick, or suffered from exercise intolerance. Concerned and exacerbated, I asked my hematologist for a bone marrow aspirate. He declined indicating that my numbers hadn't changed and therefore it wasn't warranted, even though I had never had one before (that should have told me something about this doctor but I was admittedly ignorant) so I got a second opinion and when they ran the Immunoglobulins test I had supressed IgM and IgA. I ultimately had the bone marrow aspirate and biopsy done and was diagnosed with stage 1 Myeloma shortly thereafter.
So, this being said if you don't feel good for an extended period of time then you should request a complete evaluation. If your doctor will not oblige, I would get a second opinion. The SPEP is not indicative of disease progression with everyone and often enough it is the only tests doctors run when monitoring MGUS. I have a friend who was completely non-secretory.
I have all the symptoms you listed here, most of which the SMM is the causative factor, so my advice is to find a doctor that doesn't dismiss your symptoms and who is willing to complete a full evaluation.
Good Luck! Hope to see more of you here.
jbh
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jbh
Re: MGUS and frequent monitoring
Bad Blood,
One more add on and this is something I hope we get a reaction to if not a response - Do you think Menopause could cause MGUS to progress? It seems as though the multiple myeloma symptoms and the menopause symptoms were entwined for a while and then the former subsided and I was left to wonder as you are now - could it be progressive disease? My naturopath had said that all chronic diseases worsen or present during menopause. Could it be true for MGUS too?
I actually don't hope to see you here more! Thanks so much for posting. I hope I was able to help with scaring.
One more add on and this is something I hope we get a reaction to if not a response - Do you think Menopause could cause MGUS to progress? It seems as though the multiple myeloma symptoms and the menopause symptoms were entwined for a while and then the former subsided and I was left to wonder as you are now - could it be progressive disease? My naturopath had said that all chronic diseases worsen or present during menopause. Could it be true for MGUS too?
I actually don't hope to see you here more! Thanks so much for posting. I hope I was able to help with scaring.
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jbh
Re: MGUS and frequent monitoring
Hi jbh,
I am not scared. I am also 8 years post menopause. So neither of these reflect my mgus. I am just saying... Don't let mgus run your life. You run the mgus...exercise, eat healthy. Wish you good luck.
I am not scared. I am also 8 years post menopause. So neither of these reflect my mgus. I am just saying... Don't let mgus run your life. You run the mgus...exercise, eat healthy. Wish you good luck.
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