Bence Jones Proteins

FormerMember
FormerMember
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We don’t have a diagnosis yet for my 19 year old daughter who is a type 1 diabetic. But she’s been feeling sick for over 2 years. We have seen a heart dr because of racing heart, being out of breath, and dizzy spells, nausea , headaches, paleness .They couldn’t find anything wrong. Then a gastroenterologist did a Endoscope and a colon scope. They diagnosed her with gastritis and put her on some kind a heartburn pill. Diagnosed her with just constipation because she stays constipated all the time and put her on a pill for that. She just feels fatigued no matter how much sleep she gets. Then she started having back pain this past August around her kidney area. Went to the local Doctor who diagnosed her with a UTI and put her on anabiotic‘s. That didn’t clear up so we were on anabiotic‘s twice and then another 2 times for UTI. She continued to have the back pain that was getting worse, went back to the Doctor No UTI but large quantities of microscopic blood in protein in her urine. My daughter has kept  large quantities of blood with protein in her urine since August of last year. She also started having numbness in her feet and her vision will go blurry for a few minutes. Went to see a urologist in October he did a CT scan and a cystoscope that came back fine. Was referred to a kidney specialist who did bloodwork and urinalysis in a 24 hour urine three times. The urine came back positive for Bence Jones protein on a IPE test and m protein was present in gamma region on a UPE test. I guess my question is does this automatically mean she has some form of cancer of bone marrow due to the positive on the the protein.  Could this protein be caused by something else? 

Any comments would be appreciated. 

Thanks 

Murphy 

  • Hi Murphy,

    I am so sorry to welcome you to the forum in this way, I can imagine it must be a exceptionally uncertain time for you. I am afraid that I am not a medical expert and so I don’t know what a Bence Jones protein reading is used for. From a cursory google check, it does seem to be used to investigate blood malignancies but I wouldn’t go by Google as it is often wrong and I would definitely go by the advice of your daughter’s medical team. One thing I would say is that if it is myeloma, it would be an incredibly rare example. I was diagnosed at age 36 and was considered extremely rare and so at 19 it must be exceptionally rare. But I sincerely hope that it is not myeloma and something altogether more innocent. Even if it is myeloma, I hope you will find support here. Treatments are improving all the time and whilst no cure has been found yet, there’s a lot of hope that one soon will be found and people can and are living well for a very long time even with the diagnosis.

    Wishing you and your daughter all the best

    Greg

  • FormerMember
    FormerMember in reply to greg777

    Greg,

    Thanks so much for your response. I’m praying it’s a some kind of mistake. But if it’s not I’m sure glad to have found this site. I’m sorry you had to face this at such a young age and will be praying for you and everyone who is dealing with this. I’ll keep you posted on what the Doctors find. 

    I hope you have a blessed weekend. 

    Murphy