Hello all,
I have been sitting on a medical history for a while and am afraid to have it checked out. I decided tonight to make an appointment and see if I can chase down what is happening. I will say that I have tried several times with several physicians over the years to have this investigated, and - no offense to anyone in particular - but many physicians don't take me seriously or treat me like I am a bother.
I have a several year history of significant foam almost every time I urinate. It is not albumin. It began out of the blue one day, October 2007. Sudden, foamy urine in the bowl and it has never stopped since then.
I have begun to develop significant lower back pain, and have numbness in 3/4th toes of left foot and it reaches now up to my thigh, which correlates to the left sacral pain. I teach anatomy and have worked in medicine and so I know first off - foam/protein in urine that is not albumin is myeloma until proven otherwise.
It has been so dispiriting to talk to physicians over the last several years and they just blow me off – no testing. "It's nothing, don't worry about it!" Seven years ago when it first started, a nephrologist had 24-hour urines done one year apart, and the protein levels were increasing (135 mg/day to 175 mg/day), but again he just said "don't worry about," and treated me like I was being a bother. I am a 54-year-old female.
I guess my question would be: What symptoms and signs did you have before you were diagnosed with myeloma? Looking back, what did you see, if anything?
Thanks -
Forums
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Re: What symptoms did you have before you were diagnosed?
My myeloma was found by fluke. My doctor was testing me for celiac disease and that's when she noticed that my IgA protein was high. I had no real symptoms and felt fine.
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ColleenM - Name: Colleen Mabasa
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 41
Re: What symptoms did you have before you were diagnosed?
Hi Limoncella,
If you are in the US, you do not need a doctor's prescription to get the bloodwork done that will give you an almost 100 percent certain picture of whether or not you have multiple myeloma or MGUS. Just go to a local Quest or Labcorp lab, or any other lab similar to those, and order serum protein electrophoresis (SPEP) and serum immunofixation electrophoresis (IFE) tests to be done, and also serum free light chain testing. In all but 2-3 percent of people with multiple myeloma, those tests reveal whether or not they have the disease.
If those tests come up negative and you suspect you may have multiple myeloma, have further blood tests done to see if you have the C, R, or A of the classic "CRAB" symptoms of multiple myeloma -- high Calcium levels in the blood, Renal (kidney) issues (check the creatinine level), and Anemia (your hemoglobin is a good metric for that).
If nothing is out of the ordinary for those tests and the other ones I mentioned earlier, it's doubtful you have myeloma or a related disease, but you could still have x-rays or MRIs done to look for bone lesions, and you could even go as far as having a bone marrow biopsy done.
Diagnosing multiple myeloma is not some fuzzy, subjective process in most cases. Almost all people who have the disease meet clearly defined criteria for its diagnosis, which you can find in reference articles about the disease at sites like Wikipedia or eMedicine.
Good luck!
If you are in the US, you do not need a doctor's prescription to get the bloodwork done that will give you an almost 100 percent certain picture of whether or not you have multiple myeloma or MGUS. Just go to a local Quest or Labcorp lab, or any other lab similar to those, and order serum protein electrophoresis (SPEP) and serum immunofixation electrophoresis (IFE) tests to be done, and also serum free light chain testing. In all but 2-3 percent of people with multiple myeloma, those tests reveal whether or not they have the disease.
If those tests come up negative and you suspect you may have multiple myeloma, have further blood tests done to see if you have the C, R, or A of the classic "CRAB" symptoms of multiple myeloma -- high Calcium levels in the blood, Renal (kidney) issues (check the creatinine level), and Anemia (your hemoglobin is a good metric for that).
If nothing is out of the ordinary for those tests and the other ones I mentioned earlier, it's doubtful you have myeloma or a related disease, but you could still have x-rays or MRIs done to look for bone lesions, and you could even go as far as having a bone marrow biopsy done.
Diagnosing multiple myeloma is not some fuzzy, subjective process in most cases. Almost all people who have the disease meet clearly defined criteria for its diagnosis, which you can find in reference articles about the disease at sites like Wikipedia or eMedicine.
Good luck!
Re: What symptoms did you have before you were diagnosed?
Hi Limoncella
My initial symptom, back in 2011-2012, was fatigue. Blood tests showed mild anemia and some of my cell counts were slightly out of the "normal" ranges on my CBC. My doctor thought it might be a B12 deficiency.
Then, early this year, I developed pronounced lower back pain and my doc then ordered an MRI, which revealed abnormalities in my bone marrow. I got my diagnosis last March after a whole slew of other tests, including a bone marrow biopsy.
Multiple myeloma is tricky to diagnose because it is uncommon and its symptoms are shared with a lot of other conditions, many of which are not serious at all.
I would not get upset at this point, Limoncella. It is very likely that your symptoms, even the foamy urine, could be due to something much more benign. My advice would be to see another doctor and be very frank about wanting to get to the bottom of your symptoms, and strongly voice your concern about multiple myeloma.
Good luck and be well.
My initial symptom, back in 2011-2012, was fatigue. Blood tests showed mild anemia and some of my cell counts were slightly out of the "normal" ranges on my CBC. My doctor thought it might be a B12 deficiency.
Then, early this year, I developed pronounced lower back pain and my doc then ordered an MRI, which revealed abnormalities in my bone marrow. I got my diagnosis last March after a whole slew of other tests, including a bone marrow biopsy.
Multiple myeloma is tricky to diagnose because it is uncommon and its symptoms are shared with a lot of other conditions, many of which are not serious at all.
I would not get upset at this point, Limoncella. It is very likely that your symptoms, even the foamy urine, could be due to something much more benign. My advice would be to see another doctor and be very frank about wanting to get to the bottom of your symptoms, and strongly voice your concern about multiple myeloma.
Good luck and be well.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: What symptoms did you have before you were diagnosed?
Thank you for your replies, appreciate the comments.
I have an appointment on Wed with a new person as I am out of town. I will just lay it on the table and ask for some evaluation testing. Seven years ago I did have the upep, spep and all that done at an academic facility and so I guess they took me seriously enough to do the testing.
But - the very foamy urine is still present and very concerning. Non-albumin protein in urine is not normal and so I will just ask for a repeat of the testing and a 24 hour urine. I am very healthy and so clinically when I spoke to physicians I knew personally they would always say - oh yes, those are the classic presentation symptoms for myeloma. But applying it to me - then they would say, no you don't have it. So it was a sort of strange thing. I don't want to have the disease of course, just would like to rule it out for sure.
Terry - I don't believe that any clinical test of any kind can be done in the US without the written order of a licensed medical provider. Those rules are very strict, but thank you for the suggestion.
I have an appointment on Wed with a new person as I am out of town. I will just lay it on the table and ask for some evaluation testing. Seven years ago I did have the upep, spep and all that done at an academic facility and so I guess they took me seriously enough to do the testing.
But - the very foamy urine is still present and very concerning. Non-albumin protein in urine is not normal and so I will just ask for a repeat of the testing and a 24 hour urine. I am very healthy and so clinically when I spoke to physicians I knew personally they would always say - oh yes, those are the classic presentation symptoms for myeloma. But applying it to me - then they would say, no you don't have it. So it was a sort of strange thing. I don't want to have the disease of course, just would like to rule it out for sure.
Terry - I don't believe that any clinical test of any kind can be done in the US without the written order of a licensed medical provider. Those rules are very strict, but thank you for the suggestion.
5 posts
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