I had back problems for years. And on top of that, I was diagnosed with "fibromyalgia" by a renowned rheumatologist in Hilton Head Island. So being an active 55 year old with a full time job, I did not have time to be "sick". But I was not done, I was sent for steroid shots in my back. Finally my back was so bad I was sent to another neurologist. In between appointments (I was to get an MRI ), I fell on my butt and thought nothing of it. Just a slip and bang. No pain, nothing. But when I got the MRI, it showed I had compression fractured my T-9 , T-10 vertebrates. He scheduled a bone biopsy and on Valentines Day, 2012, I got a phone call that I had cancer and to see an oncologist ASAP.
According to my oncologist, I had stage 3 multiple myeloma. And that I had been sick for several years. That is why my ASCT was rushed through. I was sent to a myeloma specialist in Augusta, Georgia. I have the genetic defect on my 17th chromosome so really have had it all my life?! So while I am in remission now for 2 years, I know it will be a long hard fight when I relapse, but for now, I live my life and try not to dwell on multiple myeloma.
Forums
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Time from first symptoms to multiple myeloma diagnosis?
The initial symptom that sent me to my PCP in June of 1999 was swollen feet. Every morning they would start out normal, but by midday after standing at work, they were spilling out over my shoes. My doctor tried a few different things, but with no results, so she sent me to the internist in the fall. He suspected kidney involvement, so he sent me to the nephrologist at the end of November.
The nephrologist wanted to rule out myeloma with a bone marrow biopsy before he went ahead with the kidney biopsy, since the kidney biopsy is more risky and he didn't want to do it if not absolutely necessary. He sent me to the hematologist - oncologist, who did the BMB and other tests on a Friday in early January 2000, and told me to come back Monday. And we know the result - the nephrologist did not have to do the kidney biopsy. I had 35% myeloma cells in the marrow, and lesions on my skull. I started treatment that week - so that was my introduction to the new millennium !!
I suspect I had it for quite awhile before the swelling of the feet happened ... but from first doctor visit till diagnosis was about 7 months. 14 years later, still doing well.
The nephrologist wanted to rule out myeloma with a bone marrow biopsy before he went ahead with the kidney biopsy, since the kidney biopsy is more risky and he didn't want to do it if not absolutely necessary. He sent me to the hematologist - oncologist, who did the BMB and other tests on a Friday in early January 2000, and told me to come back Monday. And we know the result - the nephrologist did not have to do the kidney biopsy. I had 35% myeloma cells in the marrow, and lesions on my skull. I started treatment that week - so that was my introduction to the new millennium !!
I suspect I had it for quite awhile before the swelling of the feet happened ... but from first doctor visit till diagnosis was about 7 months. 14 years later, still doing well.
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janner - Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2000
- Age at diagnosis: 47
Re: Time from first symptoms to multiple myeloma diagnosis?
Hi Hopeful27,
There's back pain & back pain. Sometimes it is hard to distinguish between back pain that is bone related & back pain that is muscle related - that is until you know. Myeloma is an incredibly heterogeneous disease so I am assuming (I shouldn't) that it also grows at different rates. For some it may be a slow growth (years) for others it may be faster (months). My blood works were nearly normal 2 years prior to diagnosis.
Two years prior to my diagnosis I went to see my GP (doctor) because I was wondering whether I was pre-diabetic. I had blood works done & everything was fine apart from a slight increase in my total serum protein. The normal range is ~ 64 - 83 g/L mine was 84 g/L. Not too far out of the normal range. At this stage I was still doing adult gymnastics, swimming, trampolining with my kids (then 4 & 8) - I was fairly active.
Zoom ahead 1 1/2 years. I had a really bad cold that seemed to stick around forever & my ribs really hurt after a particularly nasty coughing fit. I had an X-ray of my ribs & nothing unusual showed up (but they probably weren't looking for anything really unusual). 6 months later I was still fairly active but the adult gymnastic program had closed (probably very lucky for me that it had) and I was building a 16 m dry stone wall when I picked up a rock (~ 20 kg) & I felt my back "give". That made me pause - it hurt. BUT my husband is 193 cm (6 4) & has a "bad" back so I was wondering whether it was like his & I had done something to some of my muscles. Lots of people have bad backs.
Then ~3 weeks later I was jumping on the trampoline (yes it did hurt then) & I was showing the children how to do a 270 degree twist. My spine/vertebrae snapped then. It was excruciating. I knew I had done something very bad.
I went to a masseuse who thought I had done something to L3 (it was actually L4) & told me if I was a doctor I would send you to have a CT scan. I went to a GP & he told me that it was muscular. 4 weeks later I went back to see my GP who ordered a CT scan because she thought I had a pro-lapsed disc - I was in hospital & on chemo 4 days later.
At diagnosis my total serum protein was >100 g/L, my haemogloblin was 84 g/L (normal is 115 - 170 g/L) & my paraprotein [M-spike] was 67 g/L [6.7 g/dL].
All the best.
There's back pain & back pain. Sometimes it is hard to distinguish between back pain that is bone related & back pain that is muscle related - that is until you know. Myeloma is an incredibly heterogeneous disease so I am assuming (I shouldn't) that it also grows at different rates. For some it may be a slow growth (years) for others it may be faster (months). My blood works were nearly normal 2 years prior to diagnosis.
Two years prior to my diagnosis I went to see my GP (doctor) because I was wondering whether I was pre-diabetic. I had blood works done & everything was fine apart from a slight increase in my total serum protein. The normal range is ~ 64 - 83 g/L mine was 84 g/L. Not too far out of the normal range. At this stage I was still doing adult gymnastics, swimming, trampolining with my kids (then 4 & 8) - I was fairly active.
Zoom ahead 1 1/2 years. I had a really bad cold that seemed to stick around forever & my ribs really hurt after a particularly nasty coughing fit. I had an X-ray of my ribs & nothing unusual showed up (but they probably weren't looking for anything really unusual). 6 months later I was still fairly active but the adult gymnastic program had closed (probably very lucky for me that it had) and I was building a 16 m dry stone wall when I picked up a rock (~ 20 kg) & I felt my back "give". That made me pause - it hurt. BUT my husband is 193 cm (6 4) & has a "bad" back so I was wondering whether it was like his & I had done something to some of my muscles. Lots of people have bad backs.
Then ~3 weeks later I was jumping on the trampoline (yes it did hurt then) & I was showing the children how to do a 270 degree twist. My spine/vertebrae snapped then. It was excruciating. I knew I had done something very bad.
I went to a masseuse who thought I had done something to L3 (it was actually L4) & told me if I was a doctor I would send you to have a CT scan. I went to a GP & he told me that it was muscular. 4 weeks later I went back to see my GP who ordered a CT scan because she thought I had a pro-lapsed disc - I was in hospital & on chemo 4 days later.
At diagnosis my total serum protein was >100 g/L, my haemogloblin was 84 g/L (normal is 115 - 170 g/L) & my paraprotein [M-spike] was 67 g/L [6.7 g/dL].
All the best.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Time from first symptoms to multiple myeloma diagnosis?
Multiple myeloma seems to be able to hide in symptoms common to other health problems. I think that makes it hard to diagnose until the symptoms start crossing lines.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Time from first symptoms to multiple myeloma diagnosis?
I am a Vietnam Vet and spent 10 months in 1965 patrolling the waters of the Viet shore helping launch air strikes into enemy held positions. My squadron was credited with dropping 10 million lbs of bombs & 1 toilet (google = VA25 toilet bomb). While we were doing this we received all our water from distilling the water we were sailing thru which contained the runoff from the Viet country side, which included Agent Orange and other herbicides along with the residue of the munitions we and the NVA were contaminating the country side with.
I was discharged in February of 1966 and proceeded back into civilian life. Within a short period of time about 6 months, I started having problems that were very much like the complaints the later vets from Iraq complained of -- extreme tiredness to the point of almost complete exhaustion after doing little or nothing. This continued till 1968 when l became sick and came down with pneumonia.
l recovered from this and continued with life as best as l could, having bouts of the exhaustion on a regular basis, up till the mid 70's when l attempted to lift an object of about 70 lbs over my head while at work. My back let go and l had stabbing pain that ran down my left leg causing me to fall - the orth doctor that I saw took X-rays and said my spine showed a narrowing between L3 &L4. Other than that he could find nothing wrong. I had several episodes of disabling pain from my back that would make me bedridden for periods of up to 3 months, then l would slowly recover.
These 2 conditions plagued me over the years - at one time causing me to be fired from my job for 6 months. This continued till 2004 when I was unable to get up off the ottoman where my wife was working on my back. She called an ambulance and they transported me to Kaiser where I was promptly given pain meds and sent home.
I lasted about 3 days and she took me back. They had to get me out of the car with a lift device that looked like it would have worked well removing engines from disabled cars. This time my GP got involved and they did tests (blood) then bone marrow, finally coming to the conclusion that I had multiple myeloma. Don't know what stage, but was told at that time I had from 3 to 5 years (I guess that must be a pretty standard guess).
I was told that L3 , L4 , & L5 were shattered. I went thru 10 months of treatment and then was taken off and still seem to be relative stable except I'm 4" [10 cm] shorter. I have received no further treatment - although I do suffer from kidney-related problems & my feet bottoms feel like I'm walking on a bunch of large beach pebbles.
Have I had multiple myeloma since 1966? Who knows? My doctors sure don't. But I can tell you one thing: my health was one he-- of a lot better before I went into the Navy than when I was discharged!
I was discharged in February of 1966 and proceeded back into civilian life. Within a short period of time about 6 months, I started having problems that were very much like the complaints the later vets from Iraq complained of -- extreme tiredness to the point of almost complete exhaustion after doing little or nothing. This continued till 1968 when l became sick and came down with pneumonia.
l recovered from this and continued with life as best as l could, having bouts of the exhaustion on a regular basis, up till the mid 70's when l attempted to lift an object of about 70 lbs over my head while at work. My back let go and l had stabbing pain that ran down my left leg causing me to fall - the orth doctor that I saw took X-rays and said my spine showed a narrowing between L3 &L4. Other than that he could find nothing wrong. I had several episodes of disabling pain from my back that would make me bedridden for periods of up to 3 months, then l would slowly recover.
These 2 conditions plagued me over the years - at one time causing me to be fired from my job for 6 months. This continued till 2004 when I was unable to get up off the ottoman where my wife was working on my back. She called an ambulance and they transported me to Kaiser where I was promptly given pain meds and sent home.
I lasted about 3 days and she took me back. They had to get me out of the car with a lift device that looked like it would have worked well removing engines from disabled cars. This time my GP got involved and they did tests (blood) then bone marrow, finally coming to the conclusion that I had multiple myeloma. Don't know what stage, but was told at that time I had from 3 to 5 years (I guess that must be a pretty standard guess).
I was told that L3 , L4 , & L5 were shattered. I went thru 10 months of treatment and then was taken off and still seem to be relative stable except I'm 4" [10 cm] shorter. I have received no further treatment - although I do suffer from kidney-related problems & my feet bottoms feel like I'm walking on a bunch of large beach pebbles.
Have I had multiple myeloma since 1966? Who knows? My doctors sure don't. But I can tell you one thing: my health was one he-- of a lot better before I went into the Navy than when I was discharged!
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Time from first symptoms to multiple myeloma diagnosis?
My family physician took note of a hight protein blood level at my annual physical last August. Follow up testing during the next two months resulted in a diagnosis of multiple myeloma. It is almost 10 months since that physical and I am still asymptomatic. I am currently in induction therapy with RVD and being evaluated for ASCT.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Time from first symptoms to multiple myeloma diagnosis?
I agree with some previous posts. I don't know the answer to that question. My diagnoses came thru back pain. I was one of those rare people that had not had persistent back pain before. I was diagnosed at stage IIIb after 3 months of back pain. I thank my internist for figuring it out.
Although 3 months may seem like too long, many people went a lot longer (see above.) I've heard some nightmarish tales of misdiagnosis.
Thanks to all for sharing your own story. It's a hard time to remember and recount for all of us. Keep the faith.
Although 3 months may seem like too long, many people went a lot longer (see above.) I've heard some nightmarish tales of misdiagnosis.
Thanks to all for sharing your own story. It's a hard time to remember and recount for all of us. Keep the faith.
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Allison - Name: Allison
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2007
- Age at diagnosis: 52
Re: Time from first symptoms to multiple myeloma diagnosis?
In my 40's:
1) dx of osteopenia - given oral bisphosphonates - continued to degrade into osteoporosis
2) repeated ear infections that were very difficult to clear up
3) suspected broken rib from coughing - x-ray inconclusive
August to November 2012 (age 51):
1) lump about 1" diameter on my collarbone - no imaging, GP wants to watch & wait
2) bone pain in my ribs and sternum - no imaging, dx of arthritis
3) rheumatologist suggested injectable bisphosphonates & PT - didn't help
4) large stones in both kidneys requiring lithotripsy
5) suspected three more broken ribs - GP didn't image any of them
6) back pain - no imaging, given PT, didn't help (actually T6 compression fracture)
7) blood work was a little off but nothing alarming
8) exhaustion that even 10 hours of sleep could not relieve
9) collar bone lump is now 2 1/2" in diameter
December 2013 (now age 52):
Finally, got an appointment with the owner of the practice who wasn't taking new patients, who actually listen to me, read my file, and sent me straight away for an MRI. The MRI technician kept saying "it's a shame they took so long to send you in here." The next day I was in the oncologist's office scheduling a bone marrow biopsy. Blood work at this point was very concerning. Diagnosed with aggressive stage III myeloma.
Through this journey I tried to find a new GP but every one I called either wasn't taking new patients or had a 6 month wait list, so I was forced to work with the ones in the practice I was already with. Out of desperation, I shared my symptoms with 3 GP's and 4 specialists and none seemed concerned, suggested imaging or suspected myeloma. One GP rolled their eyes at me, one called me a hypochondriac, and when I asked another if all my symptoms could be related, without hesitating, said no. I was grateful that the last GP actually listened to me, and was genuinely concerned that none of the other doctors in his practice had taken me seriously. Very frustrating.
Anyway, while I first noticed the lump in August, I would think myeloma had been active for at least several months time prior in order for the lesion to develop and become that large. So my very uneducated guess would be I had myeloma about a year, and perhaps MGUS prior to that.
1) dx of osteopenia - given oral bisphosphonates - continued to degrade into osteoporosis
2) repeated ear infections that were very difficult to clear up
3) suspected broken rib from coughing - x-ray inconclusive
August to November 2012 (age 51):
1) lump about 1" diameter on my collarbone - no imaging, GP wants to watch & wait
2) bone pain in my ribs and sternum - no imaging, dx of arthritis
3) rheumatologist suggested injectable bisphosphonates & PT - didn't help
4) large stones in both kidneys requiring lithotripsy
5) suspected three more broken ribs - GP didn't image any of them
6) back pain - no imaging, given PT, didn't help (actually T6 compression fracture)
7) blood work was a little off but nothing alarming
8) exhaustion that even 10 hours of sleep could not relieve
9) collar bone lump is now 2 1/2" in diameter
December 2013 (now age 52):
Finally, got an appointment with the owner of the practice who wasn't taking new patients, who actually listen to me, read my file, and sent me straight away for an MRI. The MRI technician kept saying "it's a shame they took so long to send you in here." The next day I was in the oncologist's office scheduling a bone marrow biopsy. Blood work at this point was very concerning. Diagnosed with aggressive stage III myeloma.
Through this journey I tried to find a new GP but every one I called either wasn't taking new patients or had a 6 month wait list, so I was forced to work with the ones in the practice I was already with. Out of desperation, I shared my symptoms with 3 GP's and 4 specialists and none seemed concerned, suggested imaging or suspected myeloma. One GP rolled their eyes at me, one called me a hypochondriac, and when I asked another if all my symptoms could be related, without hesitating, said no. I was grateful that the last GP actually listened to me, and was genuinely concerned that none of the other doctors in his practice had taken me seriously. Very frustrating.
Anyway, while I first noticed the lump in August, I would think myeloma had been active for at least several months time prior in order for the lesion to develop and become that large. So my very uneducated guess would be I had myeloma about a year, and perhaps MGUS prior to that.
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Stitcher88 - Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2012
- Age at diagnosis: 51
Re: Time from first symptoms to multiple myeloma diagnosis?
Hi there,
I am new to the group and the issue in this thread is one that interests me as well.
My neurologists has sent me to see a hematologists for suspected multiple myeloma. I am still in the beginning of my journey and not even sure if it is definite that I have it.
So I'm also interested in how long it typically is between first symptoms of the disease and a final diagnosis of multiple myeloma.
I am asking because I was diagnosed 7 years ago with fibromyalgia. This diagnosis came simply as a last resort, because "everything" else was ruled out. Could I have been dealing with symptoms from multiple myeloma this whole time and not known it? My neurologist found the elevated kappa / lambda ratio because he was testing for a myriad of other illnesses (mainly multiple sclerosis and other autoimmune disorders). All of my symptoms line up with multiple myeloma, but have been managed through medications for fibromyalgia. In October of last year I had spine surgery and ever since then, I have been experiencing symptoms at an alarming amount. Could the surgery have sparked a relapse in symptoms?
Any help is appreciated.
Thanks,
Chad
I am new to the group and the issue in this thread is one that interests me as well.
My neurologists has sent me to see a hematologists for suspected multiple myeloma. I am still in the beginning of my journey and not even sure if it is definite that I have it.
So I'm also interested in how long it typically is between first symptoms of the disease and a final diagnosis of multiple myeloma.
I am asking because I was diagnosed 7 years ago with fibromyalgia. This diagnosis came simply as a last resort, because "everything" else was ruled out. Could I have been dealing with symptoms from multiple myeloma this whole time and not known it? My neurologist found the elevated kappa / lambda ratio because he was testing for a myriad of other illnesses (mainly multiple sclerosis and other autoimmune disorders). All of my symptoms line up with multiple myeloma, but have been managed through medications for fibromyalgia. In October of last year I had spine surgery and ever since then, I have been experiencing symptoms at an alarming amount. Could the surgery have sparked a relapse in symptoms?
Any help is appreciated.
Thanks,
Chad
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rdawes26 - Name: Chad Dawes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: In Progress
- Age at diagnosis: 37
Re: Time from first symptoms to multiple myeloma diagnosis?
I think this is the myeloma patients' $64,000 question, and if we had a nickel for every time we thought about this, there would probably be enough money to find a cure.
I was diagnosed after a fairly short period of time, once I later found out was a plasmacytoma show up on my right upper chest (rib). I noticed the lump in June 2015, while on vacation in Florida. I thought it was a pulled muscle from lifting suitcases, and put ice and heat on it. It never hurt, and eventually went down after a week or so. July 28, 2015, the lump was back, and I felt horrible. I had pain radiating down my right arm, and felt extremely tired. Being tired was nothing new, as my job was very demanding and I spent 12-16 hour days working, so I didn't think much of the exhaustion, but the lump and pain scared me. So I went to the ER, thinking I was having a heart attack, and was diagnosed within 2 hours.
So, I guess you could say my diagnosis took about 30 days. I started treatment within 1 week, later had my autologous stem cell transplant (ASCT) in May of 2016, and am doing well. When I asked the doctor how long he thought I had had the cancer, he stated that if he went back into my records 10 years, he probably could find markers.
I agree with Nancy, tests for multiple myeloma should become standard practice. The blood tests cannot be cost prohibitive, because most of them are done now during a regular physical. Adding light chain, and proteins, can't be that much more expensive.
I tell all of my family and friends now, if you don't feel well.. GO TO THE DOCTOR. if you continue to not feel well, and you don't think your doctor is paying attention, FIND ANOTHER DOCTOR, and don't stop until you get answers.
People need to stop thinking it's age, menopause, pains from working out, etc. If it doesn't feel right, it isn't. I think that many of us were taught "not to complain", that "everyone has aches and pains". Well, no, they don't. Insist on answers, and make them show you why they came up with that diagnosis, and how they plan on treating it.
Best to all for a wonderful 2017,
Kathleen
I was diagnosed after a fairly short period of time, once I later found out was a plasmacytoma show up on my right upper chest (rib). I noticed the lump in June 2015, while on vacation in Florida. I thought it was a pulled muscle from lifting suitcases, and put ice and heat on it. It never hurt, and eventually went down after a week or so. July 28, 2015, the lump was back, and I felt horrible. I had pain radiating down my right arm, and felt extremely tired. Being tired was nothing new, as my job was very demanding and I spent 12-16 hour days working, so I didn't think much of the exhaustion, but the lump and pain scared me. So I went to the ER, thinking I was having a heart attack, and was diagnosed within 2 hours.
So, I guess you could say my diagnosis took about 30 days. I started treatment within 1 week, later had my autologous stem cell transplant (ASCT) in May of 2016, and am doing well. When I asked the doctor how long he thought I had had the cancer, he stated that if he went back into my records 10 years, he probably could find markers.
I agree with Nancy, tests for multiple myeloma should become standard practice. The blood tests cannot be cost prohibitive, because most of them are done now during a regular physical. Adding light chain, and proteins, can't be that much more expensive.
I tell all of my family and friends now, if you don't feel well.. GO TO THE DOCTOR. if you continue to not feel well, and you don't think your doctor is paying attention, FIND ANOTHER DOCTOR, and don't stop until you get answers.
People need to stop thinking it's age, menopause, pains from working out, etc. If it doesn't feel right, it isn't. I think that many of us were taught "not to complain", that "everyone has aches and pains". Well, no, they don't. Insist on answers, and make them show you why they came up with that diagnosis, and how they plan on treating it.
Best to all for a wonderful 2017,
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
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