I appreciate your feedback, Dr. Valent, on the addition of the 24-hour urine test. So you are saying there is no way the 24 hour urine test will show something abnormal that the combo of the SPEP, IFE and free light chain tests would have missed?
One of the reasons I am asking is that, in addition to the bone pain I have been going through, I have also noticed over the past week that I have been peeing all the time (like every hour, including having to wake up once during the night to pee, too, which I have never done before).
Also, noticed when I pee that there are a ton of bubbles / froth which I have read can be due to an increase in proteins in the urine.
Thanks,
Jason
Forums
Re: Not sure of my diagnosis - what should I do next?
So my GP finally gave me a referral to see the multiple myeloma specialist at my hospital. Unfortunately, the first slot available is not for 3 weeks, so I guess I have to wait. GP still can't figure out what's wrong with me based on all my blood work and other tests coming back normal. Most recent test was a regular urine analysis which came back 100% normal (including no proteins detected).
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Jashem1980
Re: Not sure of my diagnosis - what should I do next?
Jason, I am so sorry to tell you and don't want to hurt you. But maybe you just don't have myeloma, you're healthy. Probably it's anxiety that's causing you to search into this particular possibility. You blood and urine work are good. So, just let go and enjoy every day of your life.
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nomm
Re: Not sure of my diagnosis - what should I do next?
Hi nomm,
I obviously hope I don't have multiple myeloma, given the prognosis for it, but at this point my doctors are out of ideas of what is causing me all the various bone pain in my body, so they just want to be able to rule everything out completely. Unfortunately, they are not aware of other diseases that could cause the widespread bone issues in an otherwise healthy 34-year old (they have ruled everything else out). I know it's unlikely I have multiple myeloma (given my age, and the other tests showing no issues), but there is still the possibility I could have a non-secretory version, which doesn't show up in blood or urine unfortunately.Jason
I obviously hope I don't have multiple myeloma, given the prognosis for it, but at this point my doctors are out of ideas of what is causing me all the various bone pain in my body, so they just want to be able to rule everything out completely. Unfortunately, they are not aware of other diseases that could cause the widespread bone issues in an otherwise healthy 34-year old (they have ruled everything else out). I know it's unlikely I have multiple myeloma (given my age, and the other tests showing no issues), but there is still the possibility I could have a non-secretory version, which doesn't show up in blood or urine unfortunately.Jason
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Jashem1980
Re: Not sure of my diagnosis - what should I do next?
How do you know it is bone pain you are feeling? I doesn't not really sound like typical multiple myeloma bone pain since you describe it in your extremities. What about something like fibromyalgia?
My experience with myeloma is the reason it takes so long to get a diagnosis is that not many doctors think to look for it, but once they do look for it, it usually shows up quite clearly based on the M-spike, light chains, bone lesions or kidney and other issues, which you don't seem to have.
Sorry, just trying to help you. I don't think you have myeloma.
My experience with myeloma is the reason it takes so long to get a diagnosis is that not many doctors think to look for it, but once they do look for it, it usually shows up quite clearly based on the M-spike, light chains, bone lesions or kidney and other issues, which you don't seem to have.
Sorry, just trying to help you. I don't think you have myeloma.
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Anonymous
Re: Not sure of my diagnosis - what should I do next?
Hi Anonymous,
I appreciate your insight.
The first specialist my GP put me in touch with the middle of last month was a rheumatologist to check for fibromyalgia or anything similar. She ruled fibro out as a possibility in about 2 minutes going through the fibro routine checklist with me. She said it's definitely not a joint issue of any kind or anything else arthritis related.
Jason
I appreciate your insight.
The first specialist my GP put me in touch with the middle of last month was a rheumatologist to check for fibromyalgia or anything similar. She ruled fibro out as a possibility in about 2 minutes going through the fibro routine checklist with me. She said it's definitely not a joint issue of any kind or anything else arthritis related.
Jason
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Jashem1980
Re: Not sure of my diagnosis - what should I do next?
Jashem1980,
Did you ever get any other information on what this might be?
Did you ever get any other information on what this might be?
Re: Not sure of my diagnosis - what should I do next?
Jashem1980,
I had similar pain all over (worst in back and hips) and went to a neurologist that ran some labs for Epstein Barr, Cytolomegavirus, Lyme, Shingles.
Mine came back as EBV (aka mono) reactivation. I am not sure if you were able to pinpoint a diagnosis but you seemed to have some similar symptoms.
I hope you were able to get a diagnosis. I know not having one can get frustrating.
mhda
I had similar pain all over (worst in back and hips) and went to a neurologist that ran some labs for Epstein Barr, Cytolomegavirus, Lyme, Shingles.
Mine came back as EBV (aka mono) reactivation. I am not sure if you were able to pinpoint a diagnosis but you seemed to have some similar symptoms.
I hope you were able to get a diagnosis. I know not having one can get frustrating.
mhda
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mhda - Name: mhda
- Who do you know with myeloma?: father and grandfather
- Age at diagnosis: 69
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