Hello Everyone,
There appear to be some really big discrepancies when it come to getting the proper diagnoses. After researching and reading tons of info for the past 5 years on MGUS / multiple myeloma, there is so big questions that still could provide some insight for under-diagnoses MGUS patients.
Now, there seems to be a lot of MGUS people who have been diagnosed with osteoporosis. Not everyone falls into the age bracket for osteopenia or osteoporosis. When an MGUS or multiple myeloma patient complains about bone/back pain and a MRI of the back show herniated disc and other degenerative back issues. Then why is that not part of multiple myeloma staging? Why did they call the findings degenerative? I know there are other factors that play a big roll (anemia etc). I've seen most multiple myeloma patients report disc/degenerate issues! Also, won't bleeding from the m-protein fall into the treat category? Based on what the IMF myeloma foundation stated!
So how can multiple myeloma / MGUS patients not get their results confused with normal degenerate findings? Also, when a patient has equivocal lucencies that are written off as maybe osteoporosis. I think there must be more studies on these findings and it might help diagnose multiple myeloma earlier.
Any of you multiple myeloma patients want to chime in on there degenerate findings?
Forums
Re: Multiple myeloma / MGUS discrepancies
I have MGUS and osteopenia in one area, in my right hip, but my oncologist says since the other two area don't show it, then just let it go and keep on taking the dexa scan every two years.
I am 65 yearas old. I have a lot of degenerative disk diseased, including severe in my neck. I don't see any connection between it and multiple myeloma though. I have been having bone pain on and off. One place is on my foot, near but definitely not in my ankle joint. My oncologist says it is probably osteoarthirits and my complaint was dismissed.
I am 65 yearas old. I have a lot of degenerative disk diseased, including severe in my neck. I don't see any connection between it and multiple myeloma though. I have been having bone pain on and off. One place is on my foot, near but definitely not in my ankle joint. My oncologist says it is probably osteoarthirits and my complaint was dismissed.
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Carolee888
Re: Multiple myeloma / MGUS discrepancies
Hello Carolee888,
Thanks for responding back about your degenerative issues. The problem I have seen is that most MGUS patients are over the age of 40, so a MGUS patient presents with osteopenia and or degenerative bone issue the alarm bells don't normally go off. I am sure its not easy for a doctor to tell if these are normal wear and tear or early multiple myeloma progression.
However, I have been told by several other MGUS patients that there are also having bone pain and loads of degenerative conditions. There must be a connection. I have osteoporosis pretty bad and I am very active.
Thanks for sharing.
Thanks for responding back about your degenerative issues. The problem I have seen is that most MGUS patients are over the age of 40, so a MGUS patient presents with osteopenia and or degenerative bone issue the alarm bells don't normally go off. I am sure its not easy for a doctor to tell if these are normal wear and tear or early multiple myeloma progression.
However, I have been told by several other MGUS patients that there are also having bone pain and loads of degenerative conditions. There must be a connection. I have osteoporosis pretty bad and I am very active.
Thanks for sharing.
Re: Multiple myeloma / MGUS discrepancies
I was allergic to Zometa so they gave me Aredia instead.
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: Multiple myeloma / MGUS discrepancies
Disc degeneration - 09/08 approx 4 years ago I was diagnosed with a herniated disc in the thoracic spine between t7 and t8 and spinal cord compression - I had spinal fusion. On 07/12/12 I was diagnosed with MGUS - I wonder if there is a correlation?
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Alan Greenspan
Re: Multiple myeloma / MGUS discrepancies
Hi Allan,
A herniated disc is soft tissue and not a component of multiple myeloma or MGUS. The disc loses fluid, compresses as it drys out. It can even rupture. However it is not bone. A fractured vertebrae can, for example, be directly due to multiple myeloma.
I am not saying it is not horribly painful! I have 6 herniated discs and one with an anular tear. Quite normal for an old guy who did some heavy lifting in years past. I do not require surgery yet. The fact they could do a fusion means you had sufficient bone mass to get it done. So there is some good news.
A herniated disc is soft tissue and not a component of multiple myeloma or MGUS. The disc loses fluid, compresses as it drys out. It can even rupture. However it is not bone. A fractured vertebrae can, for example, be directly due to multiple myeloma.
I am not saying it is not horribly painful! I have 6 herniated discs and one with an anular tear. Quite normal for an old guy who did some heavy lifting in years past. I do not require surgery yet. The fact they could do a fusion means you had sufficient bone mass to get it done. So there is some good news.
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rickcrocetti
Re: Multiple myeloma / MGUS discrepancies
Hi,
I am 41 years old. When I was 35 (2007) I had surgery on c4-5 due to a ruptured disk. I had fusion, and was diagnosed with degenerative disk disease, and was told I needed surgery on two other disks (on either side of the ruptured) within the next 3-5 years. I have avoided that still.
I have had continued declining health issues, and a week long stint in the hospital with acute angioedema that nearly killed me. Then last year I was diagnosed with Hashimotos thyroid disease. This year in June they finally medicated it and while running extensive tests due to my crazy symptoms, they thought I might have lupus. They found MGUS instead. And thrombocytosis, mild osteopenia and I'm very anemic. They will not treat the anemia unless, when I return in October, it's still there and as bad. Because if medicates my anemia, it moves me into the category of smoldering myeloma instead of MGUS.
Anyway, I have bone pain, in my long bones, wrists, fingers and knees and hips. I also get mild joint swelling that seems to hop around. I also have days where my lymph nodes are swollen and tender for no reason. Might last a day, maybe 4. I usually stay very tired. I have gained weight. I'm not a sit around person. So being dragged down is really DRAGGING ME DOWN.
My children are 11 years apart, I suffered with endometriosis and infertility for years. I now take synthroid along with my BP meds, an antidepressant, Naproxen, potassium,and very high doses of Vitamin D, all prescription strength. I was told to eat lots of red meat cooked on iron skillet. To cook EVERYTHING on iron. And some other foods he did name off like broccoli, farina, ...
I have had high blood pressure since I was 23. I'm a generally very happy healthy person (other than what I named off haha!) We have a successful business and 2 great kids.
There's my two cents on a possible connection between degenerative diseases and MGUS. Hopefully, when I go back in October, my numbers will be better, not worse.
I am 41 years old. When I was 35 (2007) I had surgery on c4-5 due to a ruptured disk. I had fusion, and was diagnosed with degenerative disk disease, and was told I needed surgery on two other disks (on either side of the ruptured) within the next 3-5 years. I have avoided that still.
I have had continued declining health issues, and a week long stint in the hospital with acute angioedema that nearly killed me. Then last year I was diagnosed with Hashimotos thyroid disease. This year in June they finally medicated it and while running extensive tests due to my crazy symptoms, they thought I might have lupus. They found MGUS instead. And thrombocytosis, mild osteopenia and I'm very anemic. They will not treat the anemia unless, when I return in October, it's still there and as bad. Because if medicates my anemia, it moves me into the category of smoldering myeloma instead of MGUS.
Anyway, I have bone pain, in my long bones, wrists, fingers and knees and hips. I also get mild joint swelling that seems to hop around. I also have days where my lymph nodes are swollen and tender for no reason. Might last a day, maybe 4. I usually stay very tired. I have gained weight. I'm not a sit around person. So being dragged down is really DRAGGING ME DOWN.
My children are 11 years apart, I suffered with endometriosis and infertility for years. I now take synthroid along with my BP meds, an antidepressant, Naproxen, potassium,and very high doses of Vitamin D, all prescription strength. I was told to eat lots of red meat cooked on iron skillet. To cook EVERYTHING on iron. And some other foods he did name off like broccoli, farina, ...
I have had high blood pressure since I was 23. I'm a generally very happy healthy person (other than what I named off haha!) We have a successful business and 2 great kids.
There's my two cents on a possible connection between degenerative diseases and MGUS. Hopefully, when I go back in October, my numbers will be better, not worse.
Re: Multiple myeloma / MGUS discrepancies
Very interesting!! They might be able to diagnose MGUS sooner based on early degenerative disk disease. My bones are bad!!
Re: Multiple myeloma / MGUS discrepancies
Trying to touch base and find out what the results of your quest are. I have been fighting this (MGUS) since 2010 and have been told I have degenerative disc disease and degenerative disease in my hip, shoulder and neck.
Maybe if we could get a total number on the affected, it might help us.
Maybe if we could get a total number on the affected, it might help us.
Re: Multiple myeloma / MGUS discrepancies
Soooo, Alan Greenspan ... what is the economy going to do ??
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Rneb
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