Hello, I am new to this, I'm after a bit of advice. I have started with symptoms that are very like the ones to multiple myeloma.
First of all, I started with I think leg pain about 6 months ago. I went to the doctors with this and had some blood tests. My calcium level was quite high. I then had a Bence Jones test, which was negative. Since then, I have now started with increased leg pain – deep throbbing pain in my right thigh – also in my left hip. I have became very thirsty also very achy throughout my body.
I am now starting to worry as I feel I am going down hill quickly. I also have sore spots on my ribs which feel like they are bruised from inside. I have been to my doctors with this but, for some reason, they are unwilling to talk about the possibility of multiple myeloma. I myself kno there is something wrong with my body.
Would anyone suggest that I do have symptoms of multiple myeloma and what i should do? Please, I also have pain in my lower abdomen and lots of hair loss on the bottom of my legs.
I am a 41 year old male, usually very healthy. I have no obvious lumps or bumps but have sensitive armpits to touch.
Thank you to everyone that reads this, I'm also suffering blocked nose and sinus headaches xx
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Re: Advice needed - do I have multiple myeloma?
Please, any advice is welcome. I knwo people can't diagnose me. I just need to know if my symptoms are like what other people may have had, then I can ask my doc to investigate. I'm really scared about it all. I know it might be nothing, just have this dreadful feeling.
Any help / advice at all – my doc is very old school and will not welcome me asking anything about this.
Any help / advice at all – my doc is very old school and will not welcome me asking anything about this.
Re: Advice needed - do I have multiple myeloma?
Hi! I guess that further investigation would show whether or not you did have multiple myeloma, but in the meanwhile, shouldn't you be getting some immediate medical attention for the deep pains in your legs? I don't like to be alarmist but it might be something such as a blood clot, or deep vein thrombosis. I would suggest getting that checked out, maybe at an emergency department, if you have serious concerns.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Advice needed - do I have multiple myeloma?
Hi KnightyChops,
Myeloma is usually diagnosed by a series of blood, urine, and bone tests. From what I have read on this forum, doctors tend to do them sequentially, which can be agonizingly slow. You mention that your doctor is "old school." If so, he may not be thinking myeloma because its typically not found in someone as young as yourself.
Symptoms of multiple myeloma can vary from patient to patient. In EJ's case, he had rib pain that never resolved itself. Others may go for a physical and find their kidneys are failing, or that they are anemic or their calcium is too high. These symptoms warrant additional tests to understand what is going on, even if its not myeloma.
If you have the option, I would suggest going to another doctor - one who you can work with to get to the bottom of the cause of your symptoms.
Good luck!
Lyn
Myeloma is usually diagnosed by a series of blood, urine, and bone tests. From what I have read on this forum, doctors tend to do them sequentially, which can be agonizingly slow. You mention that your doctor is "old school." If so, he may not be thinking myeloma because its typically not found in someone as young as yourself.
Symptoms of multiple myeloma can vary from patient to patient. In EJ's case, he had rib pain that never resolved itself. Others may go for a physical and find their kidneys are failing, or that they are anemic or their calcium is too high. These symptoms warrant additional tests to understand what is going on, even if its not myeloma.
If you have the option, I would suggest going to another doctor - one who you can work with to get to the bottom of the cause of your symptoms.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Advice needed - do I have multiple myeloma?
First of all, thank you for the reply, I don't think it's a DVT as I've had this leg pain for quite a bit now, but it's getting worse – considerably worse. My doctor won't entertain the fact that I may or may not have something serious wrong. Everything is viral to him.
My last blood tests were high calcium, high esr, and low vitamin B. That's when I had a Bence Jones test, which was normal, but I feel I have progressively got worse with throbbing thigh and hip pain. It's a constant dull ache, horrid headaches, and pain in lower abdomen. Lots of other little things – rib pain, etc, etc,
What else can I do? I can't afford to go private. Feel trapped, but just wanted to know of symptoms so I can confront my doc about this.
Do you think if I went to A/E with this they would investigate or just say go to GP?
Thanks everyone x
My last blood tests were high calcium, high esr, and low vitamin B. That's when I had a Bence Jones test, which was normal, but I feel I have progressively got worse with throbbing thigh and hip pain. It's a constant dull ache, horrid headaches, and pain in lower abdomen. Lots of other little things – rib pain, etc, etc,
What else can I do? I can't afford to go private. Feel trapped, but just wanted to know of symptoms so I can confront my doc about this.
Do you think if I went to A/E with this they would investigate or just say go to GP?
Thanks everyone x
Re: Advice needed - do I have multiple myeloma?
I agree with Lyn. It sounds as though you're not really trusting your current doctor, so a second opinion is a good idea. Perhaps there's another doctor within your medical group who can do this?
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Advice needed - do I have multiple myeloma?
Hello KnightyChops,
I am very sorry you are so worried that you may have multiple myeloma.
I hope it will make you feel better to know that, based on what you have posted so far, it really is unlikely that you have multiple myeloma. This does not mean that you should not have further testing done to make sure this is definitely the case, but I don't think it's the main thing you should be considering as the cause of the symptoms that you're experiencing.
I say this partly based on your age and partly based on the results of the Bence Jones test that you had done, which I suspect was a urine test -- probably a 24-hour urine test. Is that correct?
As you may have seen from some of the recent discussions here in the forum, if you really want to be almost completely certain you do not have multiple myeloma, get your doctor to run a serum (blood) immunofixation electrophoresis (serum IFE, or SIFE). This will show whether you have any signs of a monoclonal protein in your blood. That's the kind of protein that myeloma cells almost always (99 percent of the time) produce.
If that test doesn't show any signs of a monoclonal protein, there are other tests that can be done, such as x-rays, further blood tests, and so on. But let's not cross that bridge now. Get the IFE test done and, if it's negative, come back and we can talk about next steps. No sense in information overload right now.
In the meantime, you may want to familiarize yourself with the criteria necessary for a myeloma diagnosis. The criteria were recently updated, but a good introduction is the "Diagnostic Criteria" section of the multiple myeloma article at Wikipedia:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Pay attention to the acronym "CRAB", since it points you in the direction of the sorts of tests necessary to determine if you have myeloma.
After you've read the Wikipedia article, read this article about the updates to the diagnostic criteria for myeloma:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
Finally, Multibilly has posted here in the forum a useful overview of the different tests carried out to diagnose and track myeloma (link to posting).
Good luck!
I am very sorry you are so worried that you may have multiple myeloma.
I hope it will make you feel better to know that, based on what you have posted so far, it really is unlikely that you have multiple myeloma. This does not mean that you should not have further testing done to make sure this is definitely the case, but I don't think it's the main thing you should be considering as the cause of the symptoms that you're experiencing.
I say this partly based on your age and partly based on the results of the Bence Jones test that you had done, which I suspect was a urine test -- probably a 24-hour urine test. Is that correct?
As you may have seen from some of the recent discussions here in the forum, if you really want to be almost completely certain you do not have multiple myeloma, get your doctor to run a serum (blood) immunofixation electrophoresis (serum IFE, or SIFE). This will show whether you have any signs of a monoclonal protein in your blood. That's the kind of protein that myeloma cells almost always (99 percent of the time) produce.
If that test doesn't show any signs of a monoclonal protein, there are other tests that can be done, such as x-rays, further blood tests, and so on. But let's not cross that bridge now. Get the IFE test done and, if it's negative, come back and we can talk about next steps. No sense in information overload right now.
In the meantime, you may want to familiarize yourself with the criteria necessary for a myeloma diagnosis. The criteria were recently updated, but a good introduction is the "Diagnostic Criteria" section of the multiple myeloma article at Wikipedia:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Pay attention to the acronym "CRAB", since it points you in the direction of the sorts of tests necessary to determine if you have myeloma.
After you've read the Wikipedia article, read this article about the updates to the diagnostic criteria for myeloma:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
Finally, Multibilly has posted here in the forum a useful overview of the different tests carried out to diagnose and track myeloma (link to posting).
Good luck!
Re: Advice needed - do I have multiple myeloma?
Thank you so much for the replies. Just very worrying when your doc keeps saying it's viral. The Bence Jones test was just a urine sample not collected over 24 hours, I am going to read through these articles and then see my doc.
Whenever I had tests, there would show a problem but it was never followed up. Had a MRI of spine which shown a hemangioma on my spine, nothing done. Then had very high calcium in blood, nothing done, and had a MRI of lower spine because of numbness in left leg, no compression.
I have lost a stone and half (21 pounds / 9.5 kg) in three weeks and have become very pale, sweating a lot more, and keep getting ear infections and prostatis four times in three months, I hope to God I haven't, but there's something niggling at me x . Will be seeing my doc first thing Monday to tell them to check that blood and other things,
Whenever I had tests, there would show a problem but it was never followed up. Had a MRI of spine which shown a hemangioma on my spine, nothing done. Then had very high calcium in blood, nothing done, and had a MRI of lower spine because of numbness in left leg, no compression.
I have lost a stone and half (21 pounds / 9.5 kg) in three weeks and have become very pale, sweating a lot more, and keep getting ear infections and prostatis four times in three months, I hope to God I haven't, but there's something niggling at me x . Will be seeing my doc first thing Monday to tell them to check that blood and other things,
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