Should I ask for one, and can a GP or neurologist order this test? The blood specialist didn't mention it and was planning on doing bone scans until my antibodies came back in the normal ranges.
Signs and symptoms include:
Neurological, too many to mention that wax and wane
Osteopenia premenopause
Fatigue, sometimes disabling
History of fever of unknown origin
A couple of blood calcium level spikes into the high range
Low globulins and immunoglobulins
Low alpha 1 proteins and beta globulins
Exercise intolerance
A couple of minor irregularities on t-spine MRI with t1/t2 hyperintensity, but no abnormal marrow signal.
Low lymphocyte counts on a couple of blood tests.
Low red blood cell count on one test.
Liver enzyme increase on one occasion
Drop in kidney function below normal on another occasion.
Triggers for increase in symptoms include illness, over exertion and prolonged exposure to heat.
No m-spike on SPEP or IFE, so I believe this pursuit has been dropped. Should I push for more testing down this avenue or let it go? I'm concerned there could be a light chain disease lurking and that because the screening tests came back normal it could be getting missed.
My docs have been wanting me to go to Mayo for over a year now. I'd rather not if I don't have to. I keep hearing this is all non-specific. Am I making mountains out of molehills? These neurological issues become mildly disabling when things flare up. Four or five times in the last couple of years there have been flare ups that left me unable to stand for more than ten minutes at a time. It's all rather disconcerting.
Forums
6 posts
• Page 1 of 1
Re: Free light chain assay
Ask for a referral to a Hematologist / Onocologist... most doctors dont treat outside of their specialty..
Re: Free light chain assay
Thank you for replying. My annual visit with the neurologist is tomorrow. I was hoping to have some direction before then. It sounds like I need to get a referral for another hematologist for a second opinion?
The hematologist ran a quantitative immunoglobulin which came back normal this time. She decided no further testing, said she'd send her notes to the neurologist and GP, and to call if I started experiencing fevers, drenching night sweats and something else, I can't remember what. Nobody has ordered a urinary electrophoresis or light chain assay.
The hematologist ran a quantitative immunoglobulin which came back normal this time. She decided no further testing, said she'd send her notes to the neurologist and GP, and to call if I started experiencing fevers, drenching night sweats and something else, I can't remember what. Nobody has ordered a urinary electrophoresis or light chain assay.
Re: Free light chain assay
If it will help ease your mind I would pursue the light chain tests, why not? My family doctor told me she had recieved a notice from the local hospital that they no longer use the 24 Hour Urine screening (for light chains) and only do the Free Lights blood test (I don't really understand this test, it is more complilcated, but much easier for the patient 
) Can you just have your family dr. order the tests?
What kind of bone scans were they going to do? the bone scan test is not that acurate for multiple myeloma, unless she was talking about PET / CT/ MRI? Part of the multiple myeloma work up is a skeletal survey, which is basically plain xrays of your skull, spine, pelvis, femurs, upper arms to look for bone involvment. Have you had this before?
) Can you just have your family dr. order the tests? What kind of bone scans were they going to do? the bone scan test is not that acurate for multiple myeloma, unless she was talking about PET / CT/ MRI? Part of the multiple myeloma work up is a skeletal survey, which is basically plain xrays of your skull, spine, pelvis, femurs, upper arms to look for bone involvment. Have you had this before?
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Free light chain assay
The blood specialist was thinking thymoma or lymphomas, not myeloma. Maybe this is why she chose to not do any more testing. She said because my kidney and liver function are all normal, and my antibodies are all now normal, there is no reason to do the deeper testing. If the antibodies had come back low, she was going to do either a chest CT or a skeletal survey.
I asked the neurologist about this free light chain and he said it wasn't an unreasonable request, but that it had to be ordered through the hematologist. I called and asked. She said no. I'm not sure if GP can order it or not.
So, I'm basically stuck again with no way forward. I asked her about paraneoplastic syndromes (having a lot of neuro symptoms, which came on two years ago). Her answer was that you have to be diagnosed with cancer to go looking for paraneoplastic causes for neurological problems. Nevermind the paraneoplastic problems can be the first sign there is a cancer before it's detectable. So in essence, a person has to wait until the cancer shows up on the screening tests to get diagnosed, when it's likely more advanced and less curable.
If I stick with this doc, it sounds like she won't run any tests until a person comes in with smack you in the face obvious cancer. Not a comforting thought. I asked the neuro if he thought I should go for a second opinion, maybe at a uni neurology clinic. Waiting to hear back.
I asked the neurologist about this free light chain and he said it wasn't an unreasonable request, but that it had to be ordered through the hematologist. I called and asked. She said no. I'm not sure if GP can order it or not.
So, I'm basically stuck again with no way forward. I asked her about paraneoplastic syndromes (having a lot of neuro symptoms, which came on two years ago). Her answer was that you have to be diagnosed with cancer to go looking for paraneoplastic causes for neurological problems. Nevermind the paraneoplastic problems can be the first sign there is a cancer before it's detectable. So in essence, a person has to wait until the cancer shows up on the screening tests to get diagnosed, when it's likely more advanced and less curable.
If I stick with this doc, it sounds like she won't run any tests until a person comes in with smack you in the face obvious cancer. Not a comforting thought. I asked the neuro if he thought I should go for a second opinion, maybe at a uni neurology clinic. Waiting to hear back.
Re: Free light chain assay
Dear jumpinjiminy,
Your situation sounds complicated, and we probably cannot do it justice in this forum. I like the idea of another opinion, and I think the Mayo Clinic would be an excellent choice. If you go, I would see a Hematologist-Oncologist and a Neurologist while you are there. If there is clear evidence of high calcium levels, anemia, bone lesions or low immunoglobulin levels, I think serum free light chain testing would be of value.
Good luck!
Pete V.
Your situation sounds complicated, and we probably cannot do it justice in this forum. I like the idea of another opinion, and I think the Mayo Clinic would be an excellent choice. If you go, I would see a Hematologist-Oncologist and a Neurologist while you are there. If there is clear evidence of high calcium levels, anemia, bone lesions or low immunoglobulin levels, I think serum free light chain testing would be of value.
Good luck!
Pete V.
-
Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
6 posts
• Page 1 of 1