In May 2013, my husband, age 68 then, sought care at the Emergency Department, where he is a physician himself, because of excruciating back pain. The doctor there ordered an MRI, treated the pain, and released my husband. I, myself a primary care physician, accompanied him 2 days later to the Spine Clinic affiliated with that same hospital.
The doctor there, a senior physician, spine specialist, and author of the institution's guidelines on management of acute back pain, reviewed the MRI and performed a brief exam, then pronounced that my husband's problem was sacroiliac joint dysfunction. "What about the bone marrow edema on the MRI?" we both asked. We were concerned about that on the radiologist's interpretation. "What does that mean-bone marrow edema?"
The doctor said it meant nothing, then proceeded to instruct my husband to lie flat on his back on a table so that the doctor could perform a manipulation of the SI joint. It was impossible for him to lie flat on his back, as the pain was so terrible when he even tried, that the doctor told him to take prednisone and call him when he could lie flat.
Despite months of PT, my husband never regained the ability to lie flat, although the pain gradually lessened, though never went away. Then the pain worsened again in December 2013. It turned out that he had at that point multiple compression fractures caused by multiple myeloma, stage III, and the orthopedic surgeon stated that he actually had a fracture back in May, evident on the MRI then.
On top of the devastating impact of his being diagnosed with multiple myeloma, we had to deal with the additional anguish of the original misdiagnosis. I know that many people's multiple myeloma has been missed by doctors despite their having severe back pain as the presenting symptom, but I wonder if there are others who've been misdiagnosed despite having an MRI that showed a non-traumatic vertebral compression fracture. Or despite seeing a "spine specialist".
We are heading to Mayo in a few days for an ASCT [autologous stem cell transplant], and our focus is on getting him through that, but the reason for my post is that we brought our concerns about the error to the Office of Clinical Safety at the hospital where the misdiagnosis occurred some 6 months ago. And the day before yesterday they called my husband to inform him that they investigated and concluded that the care by the spine specialist was satisfactory. Our efforts were a waste of our time and energy.
That was quite a blow at a time when even a simple acknowledgment of the error and some stated commitment on their part to keep it from happening again would have been a needed morale booster.
How can patients and their families hope to help prevent others from suffering from such terrible medical errors? Reading the forum has impressed upon me the desire of those in the multiple myeloma community to do so.
Forums
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Cwilkerson - Name: Catherine Wilkerson
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December, 2013
- Age at diagnosis: 69
Re: Getting a timely multiple myeloma diagnosis
Hi Catherine, Thanks for sharing your husband's and your story. To me, hearing about this back pain that was excruciating and yet went undiagnosed as multiple myeloma points out that multiple myeloma is a rare disease. It is only 1% of cancer diagnoses. Fortunate are those who have their MGUS or smoldering myeloma picked up in a routine check up, including the appropriate protein testing.
I went through a similar situation, although fortunately almost immediately after having the fractures, we got the right blood tests done, and the rest of the diagnostics, to get the diagnosis. It was already known that I had osteopenia, and I was being treated for that. After my treatments started, with Velcade / dex and also bisphosphonates, my situation improved a lot!
It now think that it is unfortunate that many other cancers are screened for routinely at annual check ups, and yet perhaps not the signs and symptoms of myeloma.
I hope that everything is going better now for your husband.
I went through a similar situation, although fortunately almost immediately after having the fractures, we got the right blood tests done, and the rest of the diagnostics, to get the diagnosis. It was already known that I had osteopenia, and I was being treated for that. After my treatments started, with Velcade / dex and also bisphosphonates, my situation improved a lot!
It now think that it is unfortunate that many other cancers are screened for routinely at annual check ups, and yet perhaps not the signs and symptoms of myeloma.
I hope that everything is going better now for your husband.
Last edited by Nancy Shamanna on Sun Aug 17, 2014 7:51 pm, edited 1 time in total.
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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: Getting a timely multiple myeloma diagnosis
Whenever I hear stories like this (and having it happen to two doctors, no less), I am again amazed at the luck ... or perhaps it's simply at the level of care and 'keeping one's eyes open" that got me diagnosed when I was, when I still had no bone involvement and the only symptom was a mild anemia and elevated red blood cell levels.
I will be forever grateful to the primary care physician who, just on a hunch, sent me for the blood tests.
Thank you, Dr. Hassler.
I will be forever grateful to the primary care physician who, just on a hunch, sent me for the blood tests.
Thank you, Dr. Hassler.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Getting a timely multiple myeloma diagnosis
My husbands diagnosis fortunately came before he had any bone involvement. But that's not to say that we hadn't been to hell and back before he was diagnosed and treated.
I think the greatest disservice that people in general do to themselves is to perceive doctors as infallible. Whatever our personal health issue is, we need to see our doctors as fallible, and be aggressive patient advocates. With the numerous health issues my husband has faced over the past 3 years, I have been aggressive to the point of being rude. That is not my preferred behavior. But if I had listened to the medical professionals who were treating him, my husband would be in a locked unit somewhere, or dead.
I can credit some great doctors along the way for getting him some good care. And even some excellent care. But we have also been left high and dry with the options of a lot of psychotropic medications, or locking him up, or both. And for the record, at this time my husband is a fully functioning person who happens to have multiple myeloma, and heart disease, and a currently undetectable brain injury.
I think the greatest disservice that people in general do to themselves is to perceive doctors as infallible. Whatever our personal health issue is, we need to see our doctors as fallible, and be aggressive patient advocates. With the numerous health issues my husband has faced over the past 3 years, I have been aggressive to the point of being rude. That is not my preferred behavior. But if I had listened to the medical professionals who were treating him, my husband would be in a locked unit somewhere, or dead.
I can credit some great doctors along the way for getting him some good care. And even some excellent care. But we have also been left high and dry with the options of a lot of psychotropic medications, or locking him up, or both. And for the record, at this time my husband is a fully functioning person who happens to have multiple myeloma, and heart disease, and a currently undetectable brain injury.
Re: Getting a timely multiple myeloma diagnosis
Catherine,
In the last three years I have been reading the Beacon since my myeloma diagnosis I have heard many stories similar to yours. I believe that improvements in the earlier diagnosis of myeloma would be a significant improvement in the myeloma treatment. Though there is no cure, early diagnosis can make the difference between having some years with really good quality of life, or not, by getting control of the myeloma before significant vertebrae damage is done.
Like Dianaiad I was fortunate enough to have a GP doctor whose actions led to me being diagnosed with myeloma within two weeks of when I had my first visit with him for back and rib pain. It would have been so easy for him to give me a prescription for pain killers and send me on my way. But he was not satisfied when I could not point to anything I may have done to hurt my back.
Then he saw my CBC numbers were off from a sinus surgery a month earlier while looking over my medical records in the examination room, and then he knew there was something more to this than just a little back pain. He ordered a battery of lab tests and aggressively started investigating what the root cause of my problem was.
He ruled out a lot of things in the first few days after that first appointment. I am not sure he made a myeloma diagnosis himself, I never asked and he never told me, but he sent me to oncology the following week where I had my first biopsy and was given the diagnosis shortly after that.
I hope a small silver lining out of sharing your experience is the lesson of getting early and effective treatment before bone significant damage sets in. For those who are fortunate enough to get an early diagnosis before significant bone damage and other problems have set in, don’t squander the opportunity by procrastinating treatment or rejecting the myeloma treatment novel agents as “poisons” and seeking “alternative” medicine therapies of dubious effectiveness.
In the last three years I have been reading the Beacon since my myeloma diagnosis I have heard many stories similar to yours. I believe that improvements in the earlier diagnosis of myeloma would be a significant improvement in the myeloma treatment. Though there is no cure, early diagnosis can make the difference between having some years with really good quality of life, or not, by getting control of the myeloma before significant vertebrae damage is done.
Like Dianaiad I was fortunate enough to have a GP doctor whose actions led to me being diagnosed with myeloma within two weeks of when I had my first visit with him for back and rib pain. It would have been so easy for him to give me a prescription for pain killers and send me on my way. But he was not satisfied when I could not point to anything I may have done to hurt my back.
Then he saw my CBC numbers were off from a sinus surgery a month earlier while looking over my medical records in the examination room, and then he knew there was something more to this than just a little back pain. He ordered a battery of lab tests and aggressively started investigating what the root cause of my problem was.
He ruled out a lot of things in the first few days after that first appointment. I am not sure he made a myeloma diagnosis himself, I never asked and he never told me, but he sent me to oncology the following week where I had my first biopsy and was given the diagnosis shortly after that.
I hope a small silver lining out of sharing your experience is the lesson of getting early and effective treatment before bone significant damage sets in. For those who are fortunate enough to get an early diagnosis before significant bone damage and other problems have set in, don’t squander the opportunity by procrastinating treatment or rejecting the myeloma treatment novel agents as “poisons” and seeking “alternative” medicine therapies of dubious effectiveness.
Last edited by Eric Hofacket on Mon Aug 18, 2014 3:54 pm, edited 1 time in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Getting a timely multiple myeloma diagnosis
Several months ago I read a blog posting in which the author suggested that raising awareness of the warning signs for multiple myeloma in the medical community would do more for those afflicted with disease than all of the research going on into new drugs. While this may be something of an overstatement, it raises an important point: greater awareness is needed and it can have a large impact on future quality of life for those diagnosed with multiple myeloma.
In my own little way, by talking about the disease and its warning signs with anyone who will listen, I have been trying to advance the goal of greater awareness. Like Eric, I have read many renditions in the forums of patients who went diagnosed for far too long and who have suffered needlessly because of it.
No one wants to hear the diagnosis but if you have multiple myeloma it's better to hear sooner rather then later.
In my own little way, by talking about the disease and its warning signs with anyone who will listen, I have been trying to advance the goal of greater awareness. Like Eric, I have read many renditions in the forums of patients who went diagnosed for far too long and who have suffered needlessly because of it.
No one wants to hear the diagnosis but if you have multiple myeloma it's better to hear sooner rather then later.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Getting a timely multiple myeloma diagnosis
Hello Catherine,
You ask how we can prevent others from suffering such medical errors ... I'm not sure we can prevent this error 100%, but we can do a better job of reducing the incidence of mis-diagnosing myeloma for something else. I think the problem is two fold.
One, myeloma is a rare cancer with an asymptomatic onset and many patients are usually not diagnosed until one of the CRAB features are present. Many of the symptoms of myeloma mimic other issues and both patient and physician tend to be misled regarding diagnosis.
The second problem, as Andrew posted earlier,, is the lack of public awareness. Fortunately, myeloma is a rare cancer and is only on the front pages when it afflicts someone in the public eye. I was fortunate that my primary care physician noticed an elevated blood protein while reviewing my labs during my annual physical. I understand that this is often missed, or overlooked by some physicians.
On the surface one might suggest that an annual blood protein might be a good screen for early myeloma detection. However in light of recent controversy over the value of PSA, mammogram and PAP tests, and the small population of myeloma patients, it is unlikely that healthcare leaders would promote any type of screen for myeloma.
Public awareness is badly needed .... most people have never heard of multiple myeloma.
As physicians, I'm sure you are keenly aware of all these issues, and I am not trying to imply that you are not. As a patient I am grateful for all the progress made in treating myeloma, however it appears we could do a better job with early diagnosis, and public awareness of this disease.
I wish you and your husband the very best, and I hope we will see more posts in the forum from you as time goes on.
Good luck and God Bless
You ask how we can prevent others from suffering such medical errors ... I'm not sure we can prevent this error 100%, but we can do a better job of reducing the incidence of mis-diagnosing myeloma for something else. I think the problem is two fold.
One, myeloma is a rare cancer with an asymptomatic onset and many patients are usually not diagnosed until one of the CRAB features are present. Many of the symptoms of myeloma mimic other issues and both patient and physician tend to be misled regarding diagnosis.
The second problem, as Andrew posted earlier,, is the lack of public awareness. Fortunately, myeloma is a rare cancer and is only on the front pages when it afflicts someone in the public eye. I was fortunate that my primary care physician noticed an elevated blood protein while reviewing my labs during my annual physical. I understand that this is often missed, or overlooked by some physicians.
On the surface one might suggest that an annual blood protein might be a good screen for early myeloma detection. However in light of recent controversy over the value of PSA, mammogram and PAP tests, and the small population of myeloma patients, it is unlikely that healthcare leaders would promote any type of screen for myeloma.
Public awareness is badly needed .... most people have never heard of multiple myeloma.
As physicians, I'm sure you are keenly aware of all these issues, and I am not trying to imply that you are not. As a patient I am grateful for all the progress made in treating myeloma, however it appears we could do a better job with early diagnosis, and public awareness of this disease.
I wish you and your husband the very best, and I hope we will see more posts in the forum from you as time goes on.
Good luck and God Bless
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Getting a timely multiple myeloma diagnosis
It took me 2 probably more like 3 years to get a diagnosis. I've posted my story here before. Saw many different specialists, but at the end of the day being a female, and 30 years old, myeloma is not exactly a probable differential diagnosis. The working diagnosis was MS, but all the MS tests were not coming back with the right results. I had nerve issue, but more of the peripheral side of things.
Anyway, long story short, I was finally diagnosed with multiple myeloma in the ER. Blood counts were bad, I started fainting, and my hemoglobin was blood transfusion low.
Another issue with my case is a lot of my symptoms were related to hyperviscocity syndrome, which is not too common for multiple myeloma patients, so it was even more confusing.
I was so upset about my case and blamed doctors, but at the end of the day I'm now so far out from that (4.5 years) and I'm now blessed with good compassionate doctors. I did get a new GP and the office setup is much better for me (same day appointment), so my care all around is good. Any little thing is usually worked up now, but that is probably true for all cancer patients.
Anyway, long story short, I was finally diagnosed with multiple myeloma in the ER. Blood counts were bad, I started fainting, and my hemoglobin was blood transfusion low.
Another issue with my case is a lot of my symptoms were related to hyperviscocity syndrome, which is not too common for multiple myeloma patients, so it was even more confusing.
I was so upset about my case and blamed doctors, but at the end of the day I'm now so far out from that (4.5 years) and I'm now blessed with good compassionate doctors. I did get a new GP and the office setup is much better for me (same day appointment), so my care all around is good. Any little thing is usually worked up now, but that is probably true for all cancer patients.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Getting a timely multiple myeloma diagnosis
Our daughter was diagnosed at 32 finally after a year of symptoms which kept getting worse.
In March of 2011 she went to the doc for fatigue. I have been diabetic since age 14 so that was the first thing they tested, which came up negative. She had been dieting and exercising so they thought it was her diet, has a stressful job, and was out of shape. 3 months later she went to the doctor for UTI and at that time they also saw she was anemic, so they prescribed iron supplements. Then she got another uti so they sent her to kidney specialist.
By Thanksgiving she had lost a lot of weight and was complaining about shoulder pain. Went for more blood work during Christmas week and beginning of 2012 was told to go to the ER. That is when she was diagnosed.
I feel like if it was caught earlier she would not have the bone issues she has. At diagnosis, we were told older men get this disease. As I read the Beacon, I can see this is not true. It seems more and more younger people are getting myeloma. I think because the perception is that older people get this, and therefore it is not as readily tested for in younger people.
In March of 2011 she went to the doc for fatigue. I have been diabetic since age 14 so that was the first thing they tested, which came up negative. She had been dieting and exercising so they thought it was her diet, has a stressful job, and was out of shape. 3 months later she went to the doctor for UTI and at that time they also saw she was anemic, so they prescribed iron supplements. Then she got another uti so they sent her to kidney specialist.
By Thanksgiving she had lost a lot of weight and was complaining about shoulder pain. Went for more blood work during Christmas week and beginning of 2012 was told to go to the ER. That is when she was diagnosed.
I feel like if it was caught earlier she would not have the bone issues she has. At diagnosis, we were told older men get this disease. As I read the Beacon, I can see this is not true. It seems more and more younger people are getting myeloma. I think because the perception is that older people get this, and therefore it is not as readily tested for in younger people.
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TJ13
Re: Getting a timely multiple myeloma diagnosis
I'll just throw my experience in for posterity.
I was being seen by my PCP back in 2011 because of some excessive bleeding during an oral surgery procedure. He ran the blood work and didn't think there was anything wrong with my coagulation numbers, but he noticed that I was pale and anemic and that I had a very high calcium level.
After puzzling about this for a few minutes, he decided that I was deficient in vitamin D and that I needed supplements. I went home, got some vitamin D, and continued on my merry way.
A year later, I had a new PCP and I asked him about possible bleeding issues, as my mom had just been diagnosed with a form of mild hemophilia. He went ahead and ran some tests and the next thing I knew, I had an appointment with a hematologist.
She, of course, caught on to the high calcium / anemia combination right away, and the next-next thing I knew, I was laying on my stomach getting a bone marrow biopsy.
It was unfortunate that my earlier PCP did not recognize what was happening and I absolutely agree that it would be good to get more information out to PCPs about the signs and symptoms of myeloma. I ended up getting treated before the major effects of the disease caught up with me, but it could have been VERY different had I not changed doctors when I did.
I was being seen by my PCP back in 2011 because of some excessive bleeding during an oral surgery procedure. He ran the blood work and didn't think there was anything wrong with my coagulation numbers, but he noticed that I was pale and anemic and that I had a very high calcium level.
After puzzling about this for a few minutes, he decided that I was deficient in vitamin D and that I needed supplements. I went home, got some vitamin D, and continued on my merry way.
A year later, I had a new PCP and I asked him about possible bleeding issues, as my mom had just been diagnosed with a form of mild hemophilia. He went ahead and ran some tests and the next thing I knew, I had an appointment with a hematologist.
She, of course, caught on to the high calcium / anemia combination right away, and the next-next thing I knew, I was laying on my stomach getting a bone marrow biopsy.
It was unfortunate that my earlier PCP did not recognize what was happening and I absolutely agree that it would be good to get more information out to PCPs about the signs and symptoms of myeloma. I ended up getting treated before the major effects of the disease caught up with me, but it could have been VERY different had I not changed doctors when I did.
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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
17 posts
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