Hello. Thank you for reading my post. Here is my story, with a few questions ...
I have suffered with fibromyalgia for 15 years. I began having pain in my back and neck which was unrelenting. I had decided to try a spinal cord stimulator for pain relief. As a part of this process, an MRI of my spine was done.
The radiologists commented that I had a "very heterogeneous marrow signal ... patient needs evaluated for myeloma or other hematologic malignancy."
I sent these results to my physician (as the MRI was ordered by a pain management doc). My doctor ordered a CBC, with a peripheral blood smear. The CBC was normal, except for being on the edge (by one tenth of a point) of anemia.
The pathologist commented on the smear that there is a "pronounced roulleaux formation in the monocytic monochromic red blood cells" (please excuse spelling errors).
My doctor told me, prior to the smear and CBC, that he had never seen an MRI with that recommendation. He has been practicing now for 6 years.
The pathologist recommended that the serum protein electrophoresis with immunofixation be performed. My doctor will be out for one week, so I am left to worry.
Is my understanding correct in that it sounds as if I have multiple myeloma? And that, should the M-spike show on the next test, I do have multiple myeloma or some non-Hodgkins cancer?
Thank you for your thoughts!
One final note ... Over the past couple of years, I suffer with multiple infections of the sinus and ear that never go aways. Antibiotics help, but within several weeks, I am back at the doctor. I also have night sweats, a fairly constant low-grade fever, and diabetes. I read that diabetes can cause the roulleaux formation, and frequent infections. The myeloma symptoms seem fairly pronounced to me, however, so I am very concerned.
Mara
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Re: Looking like myeloma - next steps?
I completely understand how long a week can be in these circumstances. I would not be hard on your doctor for being inexperienced with myeloma. I have gone to urgent care and been seen by doctors with 10 years of experience and I was the first patient they have ever had with myeloma. My GP doctor has only had two myeloma patients and I am the second.
If this is myeloma, which I hope it is not, then you are fortunate that it has not taken that long to get a diagnosis. I have read that, on average, it takes three visits to the GP doctor and 6 months before a myeloma diagnosis is made, and a lot of damage can be done in that time.
I would not be surprised if your doctor refers you to a hematologist soon. If this is myeloma, you will certainly be referred to an oncologist for treatment.
Best wishes to you and please keep us up to date on your situation. If you have myeloma, the Beacon is a great resource for information on myeloma and reaching out to others with myeloma.
If this is myeloma, which I hope it is not, then you are fortunate that it has not taken that long to get a diagnosis. I have read that, on average, it takes three visits to the GP doctor and 6 months before a myeloma diagnosis is made, and a lot of damage can be done in that time.
I would not be surprised if your doctor refers you to a hematologist soon. If this is myeloma, you will certainly be referred to an oncologist for treatment.
Best wishes to you and please keep us up to date on your situation. If you have myeloma, the Beacon is a great resource for information on myeloma and reaching out to others with myeloma.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Looking like myeloma - next steps?
Eric summed up things pretty nicely. A week can indeed seem like an eternity, but I would try and not go down a bunch of "what-if rat holes" about what might be going on until you've got your test results back.
Eric is also right that if the serum protein electrophoresis (SPEP) or immuonfixation (IFE) were to come back with any positive signs for a monoclonal gammopathy of some sort, that your doc would then very likely refer you to a hematologist to run some additional tests (you can't make a definitive diagnosis of multiple myeloma based on just an IFE and SPEP test). If that occurs, you want to try and find a best-in-class hematologist that specializes in diseases such as multiple myeloma. Folks on this forum can help you locate those kinds of specialists, depending on where you live.
Eric is also right that if the serum protein electrophoresis (SPEP) or immuonfixation (IFE) were to come back with any positive signs for a monoclonal gammopathy of some sort, that your doc would then very likely refer you to a hematologist to run some additional tests (you can't make a definitive diagnosis of multiple myeloma based on just an IFE and SPEP test). If that occurs, you want to try and find a best-in-class hematologist that specializes in diseases such as multiple myeloma. Folks on this forum can help you locate those kinds of specialists, depending on where you live.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking like myeloma - next steps?
Eric and Multibilly,
Thank you so much for your replies. You helped me put into perspective that I am really not having to wait for long, compared to most others. I will be more patient, and try not to jump to conclusions.
Regardless of my test outcomes, I wish you both very much success in your battling of myeloma. Prayers and positive energy to you both. Thank you for taking the time to address the fears of a worried stranger. Please take good care!
Mara
Thank you so much for your replies. You helped me put into perspective that I am really not having to wait for long, compared to most others. I will be more patient, and try not to jump to conclusions.
Regardless of my test outcomes, I wish you both very much success in your battling of myeloma. Prayers and positive energy to you both. Thank you for taking the time to address the fears of a worried stranger. Please take good care!
Mara
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