Hello!
I'm Lizzy, 37 years old, mom of two sweet kids.
I found your forum because i am very concerned. It all started in October. I thought it was just the flu but I never got over it and almost every 2 weeks i got sick again. I waited but I didn't get better and the night sweats started and never stopped. I waited to go to the doctors around May because I was so tired and didn't feel like myself anymore. I had blood tests done and my calcium was over 10.5 and my protein was over 9.1. The doctor is very concerned and running more tests. Just got this done.
That's not why I am scared. I had back pain for a few weeks, although nothing that I couldn't deal with. Like a week ago i was screaming in bone pain because i was having bone pain in my knee and I couldn't move for 45 minutes. And since that day I now have bad hip pain so now i am limping around and have peripheral neuropathy in my legs and hands bad. The doctor has no idea how this started. I just keep getting worse as the weeks ago by.
I was wondering if this sort of thing often happens before a multiple myeloma diagnosis.
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Re: I'm worried I might have multiple myeloma
Hi Lizzy,
Welcome to the forum, but sorry that you find yourself here. Unfortunately, a lot of patients with myeloma present with bone pain when first being diagnosed. A combination of high protein, high calcium and your sort of bone pain does warrant a more complete set of blood tests to screen for myeloma, as well as some whole body imaging. But you really won't know if you are dealing with something such as myeloma or another condition until you have the results of the follow-up tests.
Your doctor should be running a serum immunofixation, serum electrophoresis, serum free light chain, quantitative immunoglobulin, CBC and possibly a 24-hour urine test as a follow-up. If something like myeloma is suggested by the test results, he / she should then be referring you to a hematologist for more follow-up tests. Folks on this forum can help recommend some treatment centers with hematologists that specialize in myeloma, if that is what you are dealing with.
Given your bone pain, you should also be expecting to get a skeletal survey (whole-body Xray), whole-body MRI or PET/CT scan and a DEXA scan. I would personally push for the MRI or PET/CT scan. Also, if the test results suggest anything but the earliest stages of myeloma (such as early MGUS), you should also expect to get a bone marrow biopsy while under the hematologist's care.
Again, you can't know if this is myeloma or not until you have some of the initial test results in hand. But if it does turn out to be myeloma, there are a wealth of new treatments out there that can can keep the disease under control and in turn alleviate your pain - all while you are leading a near-normal life.
Welcome to the forum, but sorry that you find yourself here. Unfortunately, a lot of patients with myeloma present with bone pain when first being diagnosed. A combination of high protein, high calcium and your sort of bone pain does warrant a more complete set of blood tests to screen for myeloma, as well as some whole body imaging. But you really won't know if you are dealing with something such as myeloma or another condition until you have the results of the follow-up tests.
Your doctor should be running a serum immunofixation, serum electrophoresis, serum free light chain, quantitative immunoglobulin, CBC and possibly a 24-hour urine test as a follow-up. If something like myeloma is suggested by the test results, he / she should then be referring you to a hematologist for more follow-up tests. Folks on this forum can help recommend some treatment centers with hematologists that specialize in myeloma, if that is what you are dealing with.
Given your bone pain, you should also be expecting to get a skeletal survey (whole-body Xray), whole-body MRI or PET/CT scan and a DEXA scan. I would personally push for the MRI or PET/CT scan. Also, if the test results suggest anything but the earliest stages of myeloma (such as early MGUS), you should also expect to get a bone marrow biopsy while under the hematologist's care.
Again, you can't know if this is myeloma or not until you have some of the initial test results in hand. But if it does turn out to be myeloma, there are a wealth of new treatments out there that can can keep the disease under control and in turn alleviate your pain - all while you are leading a near-normal life.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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