I have been recently diagnosed with MGUS and hypogammaglobulinemia. Lately I have been experiencing joint pain and numbness in my hands. I have an appointment in May with my oncologist hematologist. What sort of things should I explore with the doctor to understand better if the pain and numbness are serious? For example, should I discuss getting a bone marrow biopsy?
It feels like I'm just waiting for the shoe to drop. Any help would be greatly appreciated
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Re: MGUS with joint pain & numbness
Welcome to the forum, Kmbrlyangel.
Was it the pain and numbness in your hands that led to the tests that led to your MGUS diagnosis? If so, what other tests were done to determine the cause of the hand problems?
Also, can you share with us your
- M-spike (from your "serum protein electrophoresis", or SPEP, report)
- Type of MGUS (from your "serum immunofixation", or IFE or IFX report) (e.g., "IgG kappa")
- Serum free light chain levels and ratio (kappa, lambda, and kappa-lambda ratio)
- Immunoglobulin levels (IgA, IgG, and IgM)
- Hemoglobin level
- Calcium level
Also, are you at an age where normal aging might account for the sort of hand issues that you're experiencing?
Was it the pain and numbness in your hands that led to the tests that led to your MGUS diagnosis? If so, what other tests were done to determine the cause of the hand problems?
Also, can you share with us your
- M-spike (from your "serum protein electrophoresis", or SPEP, report)
- Type of MGUS (from your "serum immunofixation", or IFE or IFX report) (e.g., "IgG kappa")
- Serum free light chain levels and ratio (kappa, lambda, and kappa-lambda ratio)
- Immunoglobulin levels (IgA, IgG, and IgM)
- Hemoglobin level
- Calcium level
Also, are you at an age where normal aging might account for the sort of hand issues that you're experiencing?
Re: MGUS with joint pain & numbness
I was diagnosed last spring with MGUS and hypogammaglobulinemia. I had a lot.of pain in my lower back and that's the original reason I went to the doctor.
Re: MGUS with joint pain & numbness
Hi Kmbrlyangel,
Welcome to the forum.
In addition to all the very pertinent questions that Terry posted, could you let us know if you received any imaging, such as a full skeletal (x-ray) survey, MRI, or PET/CT to determine why you were experiencing back pain? Are you still experiencing back pain?
Also, if you don't know the answers to Terry's questions regarding your lab results, it would be good for you to contact the oncologist's office and ask for a copy of all your lab results. Without knowing more details, it's hard for us to make any solid recommendations on what you should discuss next with your oncologist.
In any case, the combination of both lower back pain and numbness in your hands, coupled with a diagnosis of MGUS, might suggest the need for more testing to rule out conditions such as amyloidosis or a variant of minimally secretory myeloma (a situation where the myeloma disease present in your bone marrow isn't fully reflected in your blood lab numbers). But, again, knowing what to recommend next depends on what tests you have had done so far and a bit more insight into your condition.
Lastly, it's not unheard of for some MGUS patients to experience some of the symptoms that might accompany symptomatic myeloma (e.g., back pain and numbness or tingling in the extremities), even though no organ damage is actually occurring (and therefore no myeloma treatment is usually warranted or advised).
Welcome to the forum.
In addition to all the very pertinent questions that Terry posted, could you let us know if you received any imaging, such as a full skeletal (x-ray) survey, MRI, or PET/CT to determine why you were experiencing back pain? Are you still experiencing back pain?
Also, if you don't know the answers to Terry's questions regarding your lab results, it would be good for you to contact the oncologist's office and ask for a copy of all your lab results. Without knowing more details, it's hard for us to make any solid recommendations on what you should discuss next with your oncologist.
In any case, the combination of both lower back pain and numbness in your hands, coupled with a diagnosis of MGUS, might suggest the need for more testing to rule out conditions such as amyloidosis or a variant of minimally secretory myeloma (a situation where the myeloma disease present in your bone marrow isn't fully reflected in your blood lab numbers). But, again, knowing what to recommend next depends on what tests you have had done so far and a bit more insight into your condition.
Lastly, it's not unheard of for some MGUS patients to experience some of the symptoms that might accompany symptomatic myeloma (e.g., back pain and numbness or tingling in the extremities), even though no organ damage is actually occurring (and therefore no myeloma treatment is usually warranted or advised).
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS with joint pain & numbness
I agree, Multibilly. Imaging results also would be pertinent. I was planning to ask about them as the discussion continued.
There is one challenge, though, when it comes to using imaging results to understand better what is going on in Kmbrlyangel's hands. As far as I can remember, full-body imaging doesn't always include hands, feet, and other extremities. Even if that's the case, I agree that imaging results still would be useful to know when deciding what might make sense to do next.
There is one challenge, though, when it comes to using imaging results to understand better what is going on in Kmbrlyangel's hands. As far as I can remember, full-body imaging doesn't always include hands, feet, and other extremities. Even if that's the case, I agree that imaging results still would be useful to know when deciding what might make sense to do next.
5 posts
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