Multibilly,
Actually I have been experiencing several symptoms, including petechiae for the past 10 months, progressively worsening peripheral neuropathy in hands/feet/arms for the past 12 months, reddish swollen lymph nodes for 2 months, and autonomic neuropathy for at least 3 months (My blood pressure and pulse increase by an unusual amount for about 15 to 20 seconds when I go from a sitting to standing position).
Obviously each of these symptoms is non-specific, but taken together with the low IgG, high IgA, and the high K/L ratio it all just seems like too much of a coincidence, but my doc seems to think a coincidence is exactly what it is, solely on the basis of the bone marrow biopsy and the fact that all the immunofixations came back normal. What surprised me was just that the doc changed his tune from "need bone marrow, fat pad and nerve biopsies" to "nope, we're finished" once he got the bone marrow results, so I'm wondering what key
In terms of the 24-hour urine protein test, when I was tested 2 months ago my urine protein was just barely below the cutoff of the reference range (140 mg per 24 hours, with 150 being the top of the reference range). This test was repeated recently but LabCorp somehow lost the sample so I don't know where I'm at now and the doc didn't seem to think it was worth having me re-do the collection.
Forums
Re: No protein in urine, normal CBC & globulin - all clear?
Hmmm, I guess I forgot about these other symptoms. Assuming the above symptoms can't be explained by your other diagnosed conditions, then I could see how you might want to do a follow-up biopsy for amyloidosis. If it's not clear which specific organ(s) might potentially be involved in amyloidosis (that is, your kidney and liver markers are fine and you don't have any cardiac issues that would clearly point to an amyloidosis-affected organ), then I believe the common wisdom is to get a fat pad biopsy from one's abdomen.
Also, if you doctor is not able to make a diagnosis or explain your symptoms based on your tests to date and any diagnosed comorbidities, you might want to consider getting a second opinion from a multiple myeloma specialist and perhaps do any follow-up tests under the guidance of that second doctor.
Also, if you doctor is not able to make a diagnosis or explain your symptoms based on your tests to date and any diagnosed comorbidities, you might want to consider getting a second opinion from a multiple myeloma specialist and perhaps do any follow-up tests under the guidance of that second doctor.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No protein in urine, normal CBC & globulin - all clear?
Update:
Just recently got the results back from an abdominal fat pad 'punch' biopsy to look for AL amyloidosis. It came back clean, as did the bone marrow biopsy I had in early July. I have to imagine the combined sensitivity of a bone marrow biopsy and fat pad biopsy at detecting amyloidosis is fairly high, since fat pad alone is approximately 80% sensitive and bone marrow biopsy alone is 50-65% sensitive. However, some people do require a more invasive biopsy of the affected organ for diagnosis.
One thing I take as quite a good sign is that the fat pad biopsy was negative even though one of my symptoms include coagulation abnormalities with frequent outbreaks of petechiae, sometimes in the very area that was biopsied. I have a recent diagnosis of von Willebrand disease (which can be caused by AL amyloidosis), however it's good to know at the very least that the petechiae I've been experiencing probably haven't been due to direct infiltration of the blood vessels with amyloid. Who knows, maybe it really is just due to a late onset presentation of hereditary von Willebrand.
I have another biopsy scheduled for the end of the month in which my neurologist will do a punch biopsy of the skin surrounding my sural nerve, since I have nerve issues aplenty in each of my limbs. I don't know how sensitive such a biopsy would be in comparison to a biopsy of the sural nerve itself, but it's what the neurologist recommended in an attempt to avoid the complications of actually having to cut into the nerve itself.
Just recently got the results back from an abdominal fat pad 'punch' biopsy to look for AL amyloidosis. It came back clean, as did the bone marrow biopsy I had in early July. I have to imagine the combined sensitivity of a bone marrow biopsy and fat pad biopsy at detecting amyloidosis is fairly high, since fat pad alone is approximately 80% sensitive and bone marrow biopsy alone is 50-65% sensitive. However, some people do require a more invasive biopsy of the affected organ for diagnosis.
One thing I take as quite a good sign is that the fat pad biopsy was negative even though one of my symptoms include coagulation abnormalities with frequent outbreaks of petechiae, sometimes in the very area that was biopsied. I have a recent diagnosis of von Willebrand disease (which can be caused by AL amyloidosis), however it's good to know at the very least that the petechiae I've been experiencing probably haven't been due to direct infiltration of the blood vessels with amyloid. Who knows, maybe it really is just due to a late onset presentation of hereditary von Willebrand.
I have another biopsy scheduled for the end of the month in which my neurologist will do a punch biopsy of the skin surrounding my sural nerve, since I have nerve issues aplenty in each of my limbs. I don't know how sensitive such a biopsy would be in comparison to a biopsy of the sural nerve itself, but it's what the neurologist recommended in an attempt to avoid the complications of actually having to cut into the nerve itself.
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