I think there is not doubt that that you have some form of myeloid pathology.
The question is whether it is one of two "pre-symptomatic" forms: MGUS or smoldering myeloma; or whether it is "full-blown" myeloma.The technical difference between these largely depends on whether you also have one of the so-called CRAB criteria, which are indicators of organ damage: high levels of Calcium; Renal Failure; Anemia; or Bone damage.
And with your back going out with a sneeeze: sounds like (at least) B to me. (Don't see here any lab values of hemoglobin, blood cell counts, or calcium to know about the other critera). But a full blood cell count can be known in minutes.
And even if it a pre-symptomatic smoldering form, you will want to know (via genetic testing) whether it is low-risk or high risk.
Best of luck.
Forums
Re: How long does it take for a multiple myeloma diagnosis?
I have had severe front leg pain for 3 months. I went to a doctor ,he said the pain was due to a hernia in my lower back.He prescribed hydrocodone/app.The pain med did not help the pain. I was confused because the pain was in the hips and the front of both legs.After a couple of days the pain spread into my feet. I could not take it any more. I became scared and went to the emergency room. THe doctor did blood work and a kidney function test. The doctor said i have a high protein level of 8.5 and a high calcium level of 10.5 ,I also have a high urine RBC of 6 on a 0-3 scale. I am afraid i have Myeloma . I will be seeing a GP in a week. HELP!
Re: How long does it take for a multiple myeloma diagnosis?
Hi Nikkijane, It's good that you are getting your bloodwork done and trying to get to the bottom of why this damage might be happening to you. As well as seeing a GP, if the indications are towards myeloma, you would want to be seeing a haematological oncologist, prefereably a myeloma specialist. They would do more tests on your blood such as protein immunofixation and also testing for 'serum free light chain' proteins. To get a definite diagnoses a bone marrow biopsy and other tests too!
But the upshot is that if you did have myeloma, there are some really effective treatments available that could help you to recover.
The bone pains sound very severe though. I hope that you get seen really soon and get some help for these problems. Probably others here have advice for you also!
But the upshot is that if you did have myeloma, there are some really effective treatments available that could help you to recover.
The bone pains sound very severe though. I hope that you get seen really soon and get some help for these problems. Probably others here have advice for you also!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long does it take for a multiple myeloma diagnosis?
Hi Nikkijean
This is scary I know, just as I am sure many other people on this site know. I hope your diagnosis proceeds much quicker than mine is. I still am waiting to hear from my oncologist to discuss my labs which she wanted me to do. She is supposed to call me back today but I have been told that before to not hear from her. I thought I would have at least been onto having X-ray done by know. I am trying to find another oncologist but researching what doctors are available in this town has been difficult. I started this journey on July 27. I contacted the oncologist a week later and it's been only one visit with her and one test. Keep being told she will call me and then make next appointment, which took me 3 weeks to even get the first appointment. Is it like this for everyone? Still frustrated!
I do hope the best for you. I think as long as we can know what we are dealing with then we can move forward and deal with whatever is in store for us.
This is scary I know, just as I am sure many other people on this site know. I hope your diagnosis proceeds much quicker than mine is. I still am waiting to hear from my oncologist to discuss my labs which she wanted me to do. She is supposed to call me back today but I have been told that before to not hear from her. I thought I would have at least been onto having X-ray done by know. I am trying to find another oncologist but researching what doctors are available in this town has been difficult. I started this journey on July 27. I contacted the oncologist a week later and it's been only one visit with her and one test. Keep being told she will call me and then make next appointment, which took me 3 weeks to even get the first appointment. Is it like this for everyone? Still frustrated!
I do hope the best for you. I think as long as we can know what we are dealing with then we can move forward and deal with whatever is in store for us.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long does it take for a multiple myeloma diagnosis?
Back and front leg pain.protein 8.4 suppose to be 6.0-8.3 calcium 10.5 suppose to be 8.5-10.3 also blood in urine. I will be seeing a GP in aweek. I am very scared i have Myeloma.
Re: How long does it take for a multiple myeloma diagnosis?
I can only imagine how difficult it must be waiting for tests and appointments.
One has to be careful when attributing signs and symptoms to myeloma without having all of the facts. That is why it is so important to have the appropriate tests carried out by the appropriate specialist.
The classic myeloma defining characteristics (CRAB-I criteria) hyperCalcemia, Renal (kidney) Failure, Anemia (low hemaglobin or red cells), Boney lytic disease and significant Infection have to be established and related to myeloma. Anemia, renal insufficiency, and hypercalcemia can each be caused by other non-myeloma related issues. For instance diabetes can cause renal insufficiency, in turn renal insufficiency can cause anemia... 2/5 CRAB but not myeloma. Back pain can be caused by a number of issues. But the only way to know is to look. So, hopefully (nikkijane) someone is doing imaging of your back (MRI) and bone survey with concerns of myeloma.
Unfortunately, some labs take some time- as a lot of the tests -SPEP & SIFE, UPEP & UIFE, SFLC take time to process- typically several days. These tests are will help determine if further work-up for myeloma is warrented in some cases.
Fortunately, myeloma tends (although not true in all cases) to progress relatively slowly which should give you time. Ideally, a critical nature of the symptoms would be judged by your MDs and would necessitate more rapid testing. However, as I alluded to please keep a close eye on your back pain- if it significantly progresses or you note weakness, numbeness, or difficulty controlling bowel or bladder function- please act emergently.
One has to be careful when attributing signs and symptoms to myeloma without having all of the facts. That is why it is so important to have the appropriate tests carried out by the appropriate specialist.
The classic myeloma defining characteristics (CRAB-I criteria) hyperCalcemia, Renal (kidney) Failure, Anemia (low hemaglobin or red cells), Boney lytic disease and significant Infection have to be established and related to myeloma. Anemia, renal insufficiency, and hypercalcemia can each be caused by other non-myeloma related issues. For instance diabetes can cause renal insufficiency, in turn renal insufficiency can cause anemia... 2/5 CRAB but not myeloma. Back pain can be caused by a number of issues. But the only way to know is to look. So, hopefully (nikkijane) someone is doing imaging of your back (MRI) and bone survey with concerns of myeloma.
Unfortunately, some labs take some time- as a lot of the tests -SPEP & SIFE, UPEP & UIFE, SFLC take time to process- typically several days. These tests are will help determine if further work-up for myeloma is warrented in some cases.
Fortunately, myeloma tends (although not true in all cases) to progress relatively slowly which should give you time. Ideally, a critical nature of the symptoms would be judged by your MDs and would necessitate more rapid testing. However, as I alluded to please keep a close eye on your back pain- if it significantly progresses or you note weakness, numbeness, or difficulty controlling bowel or bladder function- please act emergently.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: How long does it take for a multiple myeloma diagnosis?
More testing has been done. Bone survey yesterday, which showed my only problem was a compression fracture in my T11 vertebrae. I had an MRI done this morning. Does the fracture mean anything? I don't know. Guess we have to wait for the MRI results. I have a bone marrow biopsy scheduled for next week. I am not looking forward to that for sure.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long does it take for a multiple myeloma diagnosis?
More on the ongoing saga of diagnosing my disease. MRI showed a lesion on the T11 vertebrae. Good news is that was the only one found. Waiting on the results of my bone marrow biopsy, the procedure wasn't that bad. I had more pain from my back strains. I coughed in the morning and had a sharp pain in my lower left side. I started having muscle spasms there for awhile. I have been having non stop pain the past several weeks from coughing so much. My ribs, chest, and then lower back on each side. My spine doesn't hurt though. I don't understand why everything else but my spine area hurts? Any how, I see a radiologist to talk about radiation on my back. The doctor is waiting on the biopsy before she will say I have myeloma. So funny, still waiting on an official diagnosis.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long does it take for a multiple myeloma diagnosis?
Hi, not sure if anyone can help but I have been ill for a while and I'm not sure my doc is doing the right tests. I was diagnosed with anemia back In April this year as I had a haemoglobin level of 59 (or 5.9 depending on the scale). I have been taking iron and my levels are now back to normal but I am still very fatigued.
My doctor seems convinced that I have coeliac disease even though I have no gastric symptoms and negative endoscopy.
I have been having severe night sweats and dark discoloration around my eyes. I have had a couple of bad colds in the last year and both times I broke a rib through coughing. I have a constant aching pain in my lower back and hips, made worse by excercise. I also sometimes get a tingling numbness in my lower left leg.
So far my doctor has only checked my blood count and GI tests. If I had myeloma, would this have shown up in the blood count or should I go back to the docs?
My doctor seems convinced that I have coeliac disease even though I have no gastric symptoms and negative endoscopy.
I have been having severe night sweats and dark discoloration around my eyes. I have had a couple of bad colds in the last year and both times I broke a rib through coughing. I have a constant aching pain in my lower back and hips, made worse by excercise. I also sometimes get a tingling numbness in my lower left leg.
So far my doctor has only checked my blood count and GI tests. If I had myeloma, would this have shown up in the blood count or should I go back to the docs?
Re: How long does it take for a multiple myeloma diagnosis?
HI Angel, When you got your blood tested, you may or may not have had the protein levels, and creatinine, as well as LDH, other blood cells besides RBC such as neutrophils, Platelets checked...the list goes on!
What they are looking for with myeloma is a spike of protein which is from clones of mutant plasma cells. It is 'monoclonal', and shows up in a band on protein electrophoresis (SPEP). To complicate matters further, sometimes myeloma is 'non secretory' and no 'M' spike is detectable. Could you be referred over to a haematological oncologist for further testing. If this doctor suspected myeloma, you would also have a complete x-ray done (skeletal), 24 hour urine and other tests too.
The signs of active myeloma are CRAB, i.e. excess Calcium in the blood, renal problems, anemia, bone disease. You do have anemia it seems, and the broken rib sounds like it could be a symptom too!
hOPE you don't have myeloma, but if you do, it's best to know and then you can get started on a treatment plan. Hope that helps!
What they are looking for with myeloma is a spike of protein which is from clones of mutant plasma cells. It is 'monoclonal', and shows up in a band on protein electrophoresis (SPEP). To complicate matters further, sometimes myeloma is 'non secretory' and no 'M' spike is detectable. Could you be referred over to a haematological oncologist for further testing. If this doctor suspected myeloma, you would also have a complete x-ray done (skeletal), 24 hour urine and other tests too.
The signs of active myeloma are CRAB, i.e. excess Calcium in the blood, renal problems, anemia, bone disease. You do have anemia it seems, and the broken rib sounds like it could be a symptom too!
hOPE you don't have myeloma, but if you do, it's best to know and then you can get started on a treatment plan. Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
32 posts
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