I'm Having Trouble Understanding My Lab Results And Diagnosises. What Are Good Sources To Learn From?
I got access to my patient portal. I looked up all my labs. It took me over a year to sort of understand them. The serum protein electrophoresis and the immunofixation are hard to understand. It's really important to know what type of myeloma you have. There are several different types of myeloma. I am IgG Lambda myeloma for example. So I look to see if my Lambda light chains are increasing. I also look to see if there is a band in the Lambda region on my immunofixation and my protein electrophoresis. That would indicate that there is still myeloma proteins in my blood. M spike is important as well. Normal is 0.0. Anything above that means your myeloma is active. I also got copies if my bone marrow biopsy results. I looked up what they mean. Also my facility does MRD testing on my bone marrow biopsy results each year. I call Adaptive Biotechnologies in Seattle and they email me a copy. So I know what my MRD results are. Yes, it's overwhelming for sure, but knowledge is power🥰
As others have already mentioned, Multiple Myeloma Research Foundation (MMRF) https://themmrf.org/, International Myeloma Foundation (IMF) https://www.myeloma.org/%3Cfront%3E
Health Tree: https://healthtree.org/about. If you click on the 3 dots in upper right hand corner, you can choose to create an account & get more information. Hope this helps! 🌞🌻
theMMRF.org
Health Tree Foundation.
I feel it’s good to know as much as possible about your specific condition. Doctors are incredibly busy and can overlook something. The more I understand, the better I feel.
IgA Myeloma
It Just Be So Hard Dealing With This Illness Because You Have To Wait So Long Between The Testing Dates To Go Back To The Dr For Your Result
Has Anyone Else Had This Type Of Experience?