Dianaiad wrote:
"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."
My story was very similar to yours. I went in for an annual physical exam and my primary care physician noticed that I had very slight anemia and said that it was probably nothing, but that I should see a hematologist to get it checked out.
I then saw my hematologist / oncologist and once again I had very slight anemia, and that doctor told me that it was probably nothing, but he would run some more blood tests as a precaution.
A week later he told me I had multiple myeloma.
Total shocker for me. But luckily I found out before there was any kidney damage or bone involvement.
Looking back, there were signs ... increasing number of headaches, nosebleeds, numbness in my feet and occasional tiredness. How I ever got to an m-spike of 4.0 g/dL and 80% bone marrow involvement without more damage is a mystery to me. I'm sometimes amazed at how multiple myeloma acts so differently in different people.
In any case, I was very lucky that both my primary care physician and hematologist / oncologist took the precaution of looking into it further. Had it not been for them, I'm guessing I could have gone another year or more before it would have been discovered.
Forums
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Getting a timely multiple myeloma diagnosis
Maybe we should start a Myeloma Ice Water Challenge for primary care physicians only, in order to raise their awareness of myeloma. 
Actually I'm only half joking. I wish there was something we could do to raise awareness of MGUS and multiple myeloma among physicians and the general population. I read this morning that ~5,000 people are diagnosed with ALS yearly in the United States. And ~22,000 per year are diagnosed with multiple myeloma.
This post is in no way meant to disparage the ALS ice water challenge or the seriousness of ALS. Just maybe a little jealous about how this viral phenomenon of the ice water challenge has raised awareness of ALS. I wonder how long lasting that awareness will be, though...
(And if you want a chuckle, here's a link to me doing the ALS ice water challenge last week - https://www.facebook.com/photo.php?v=10203633078180657).
Actually I'm only half joking. I wish there was something we could do to raise awareness of MGUS and multiple myeloma among physicians and the general population. I read this morning that ~5,000 people are diagnosed with ALS yearly in the United States. And ~22,000 per year are diagnosed with multiple myeloma.
This post is in no way meant to disparage the ALS ice water challenge or the seriousness of ALS. Just maybe a little jealous about how this viral phenomenon of the ice water challenge has raised awareness of ALS. I wonder how long lasting that awareness will be, though...
(And if you want a chuckle, here's a link to me doing the ALS ice water challenge last week - https://www.facebook.com/photo.php?v=10203633078180657).
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Getting a timely multiple myeloma diagnosis
I was so fortunate that my rheumatologist was paying attention to my symptoms and did a serum protein electrophoresis blood test that showed an elevated M-1 spike and serum protein level. He referred me to a hematology oncologist and he has been monitoring me every 3 months for 3 years.
At any point I had the option to start early treatment but opted to "watch and wait". I have been to Ohio State University for 3 visits to keep check on progression to the possibility of a stem cell transplant. My niece also had multiple myeloma and passed away a few weeks ago, and I decided to go ahead with early treatment. I'm praying for minimal side affects.
At any point I had the option to start early treatment but opted to "watch and wait". I have been to Ohio State University for 3 visits to keep check on progression to the possibility of a stem cell transplant. My niece also had multiple myeloma and passed away a few weeks ago, and I decided to go ahead with early treatment. I'm praying for minimal side affects.
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Rebecca Craze
Re: Getting a timely multiple myeloma diagnosis
Hi Rebecca Craze,
It seems your rheumatologist was familiar with myeloma and the signs and symptoms. I wonder if this is the exception or the rule for rheumatologists in general. Though rheumatologists are not hematologist / oncologists, that specialty requires quite a bit of knowledge of the immune system and its disorders. Maybe as part of that training they gain more familiarity with myeloma than other specialist and GPs do.
From people's experiences with initial diagnosis, another specialist I have seen over the years that often makes the first identification of potential myeloma are radiologists. Apparently, if any bone lesions show up in imaging, it is a pretty short list of things that can cause that, and myeloma is near the top.
It seems your rheumatologist was familiar with myeloma and the signs and symptoms. I wonder if this is the exception or the rule for rheumatologists in general. Though rheumatologists are not hematologist / oncologists, that specialty requires quite a bit of knowledge of the immune system and its disorders. Maybe as part of that training they gain more familiarity with myeloma than other specialist and GPs do.
From people's experiences with initial diagnosis, another specialist I have seen over the years that often makes the first identification of potential myeloma are radiologists. Apparently, if any bone lesions show up in imaging, it is a pretty short list of things that can cause that, and myeloma is near the top.
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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
Hi Eric and Rebecca. My myeloma was found by my rheumatologist. I was in the process of figuring out why my ribs hurt and thought I had an auto-immune problem. He first noticed the abnormal proteins. He went the extra step to find a hematology oncologist for me -- probably because I knew him and his wife socially.
Dana A
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Getting a timely multiple myeloma diagnosis
I had bad back pain in 2008 and was being treated by a friend of mine who was a sports physiotherapist. During this period I had a very bad pain spasm while at work. It was so painful I went to accident and emergency. They went through the motions and treated me reasonably but it was obvious that they considered me a time waster.
Then completely separately I had a routine blood test. Short time later, I got the bad news that I was suffering with multiple myeloma. I had radiotherapy on my spine and hip followed by chemo and then stem cell transplant.
I lasted six and half years with absolutely no sign of myeloma, but sadly it has now returned. Even though the protein is at a very low level, I have severe pain in my left hip and right shoulder. My point is that it is so simple to do a blood test but time and again we fob patients off as time wasters and hypochondriacs.
Anyway, I have a great team at my local hospital in the UK and I'm looking forward to getting through this next bout and getting back to playing golf!
Then completely separately I had a routine blood test. Short time later, I got the bad news that I was suffering with multiple myeloma. I had radiotherapy on my spine and hip followed by chemo and then stem cell transplant.
I lasted six and half years with absolutely no sign of myeloma, but sadly it has now returned. Even though the protein is at a very low level, I have severe pain in my left hip and right shoulder. My point is that it is so simple to do a blood test but time and again we fob patients off as time wasters and hypochondriacs.
Anyway, I have a great team at my local hospital in the UK and I'm looking forward to getting through this next bout and getting back to playing golf!
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golfyrich - Name: Richard
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 58
Re: Getting a timely multiple myeloma diagnosis
I read more and more cases like this. The worst part are the hospitals that try to protect themselves and cover up the fact that they misdiagnosed and didn't properly treat a patient. I spent one week in the hospital in December in Seattle without an MRI or even a full blood work. After returning to Florida where I live, I needed an MRI ASAP and the MRI revealed my tumor which had compressed my L3.
When I took it up with the Seattle hospital, they said they did everything right and there was no need for an MRI or labs because I didn't fail the neurological exam or didn't have the back pain for four weeks (even though I had severe pain in my back and told the hospital since last April). These reviews are nothing but a way for a hospital to find a way out of their mistakes and that's a shame.
AC
When I took it up with the Seattle hospital, they said they did everything right and there was no need for an MRI or labs because I didn't fail the neurological exam or didn't have the back pain for four weeks (even though I had severe pain in my back and told the hospital since last April). These reviews are nothing but a way for a hospital to find a way out of their mistakes and that's a shame.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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