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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Not Officially Diagnosed...but Scared

Not Officially Diagnosed...but Scared

I was sent to a rheumatologist because I was having a petechiae/purpura rash since march of 2020 with bone pain and low grade fever. Also have severe hip and back pain, neuropathy, terrible headaches, recurrent uti's, fatigue and weakness. My routine labs at my PCP kept coming back relatively normal. My WBC is always elevated. The labs the rheumatologist ran showed elevated proteins, elevated IgA, hypoalbunemia, elevated CRP, elevated kappa light chain and kappa/lambda ratio but no m… read more

A MyMyelomaTeam Member said:

Melissa, I agree with all the other comments, you should get a Myeloma Specialist. Myeloma is a complex disease and research, new medications, clinical trials etc, change daily.
The one clear test that you have MM is a bone marrow biopsy where they can take your cells and look under a microscope and actually see the Myeloma Cells. CT scans , Pet Scans will show if there are lesions or cancer cell. They will do other blood tests, CBC and Chemistry panel.
They may do electrophoresis blood test which is looking at your kappa or lambda myeloma indicators and the % ratio between them. They will also try to detect a M spike which is indicative of Myeloma. They may do a 24 hour Urine which looks for protein abnormalities in the urine.
These tests will for sure determine if you have Myeloma. Hope this helps! Love, Marcia 🌸

posted over 1 year ago
A MyMyelomaTeam Member said:

I had a bone marrow biopsy, PET scan, MRI, blood and urine test..

posted over 1 year ago
A MyMyelomaTeam Member said:

Like other said go see a specialist when I was first diagnosed it took forever to get the actual diagnosis from a regular doctor., once I seen The Specialist I had my diagnosis in 5 days.

posted over 1 year ago
A MyMyelomaTeam Member said:

I suggest you see a myeloma specialist. A PET/CT might be in order, as well as other tests besides the blood work. I had a bone marrow biopsy to confirm my diagnosis of multiple myeloma.

posted over 1 year ago
A MyMyelomaTeam Member said:

I would try to get a second opinion with an oncologist. I think you need more testing to get the right diagnosis. 🙏💕

posted over 1 year ago
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