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How long does it take for a multiple myeloma diagnosis?
How long did it take for you to be diagnosed with multiple myeloma? 3 weeks ago I learned I had an M spike of 3.4. My doctor sent the lab work to an oncologist and told me to make an appointment to learn more. I was surprised the wait would be 3 weeks to get in, apparently they were not concerned with my blood work. In the meantime while waiting for my appointment my doctor had me do a 24 hour urine test for protein. It came back negative. Now I am really perplexed at what is going on. So I finally get to see the oncologist and she reads my history and tests already done. I have had some problems with my back going out, and some possible stress fractures in one foot. I have been sick frequently and have a cold now. The oncologist feels I should not have been told I could possibly have multiple myeloma and says she needs my blood work to be done again and then perhaps we will do X-rays. I am wondering why didn't the doctor order blood work done before my appointment as she says this will take a week for results and then will be out of town for a couple days. I asked what other diseases I could possibly have instead and the oncologist didn't answer. So how long is too long? Frustrated with no answers.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long does it take for a multiple myeloma diagnosis?
Hi I'm sure the three weeks of waiting is very hard on you and for all the questions to start going around in your head!
In terms of Myeloma, especially an early plasma disorder the three weeks wating won't make a big difference, since this is a life long condition!
My own diagnosis took probably three years! but I am a rare myeloma patient who was sick since I was 29, but not diagnosed until I was 32. I kept going to Dr's but my symptoms all seemed to be different things and no one did the protein tests!
I ended up getting critically ill from being very anemic, and was sent to the ER after fainting with an irregular heart beat. ER doctor realized something was very wrong with my blood and ordered all the Myeloma tests. Didn't get my official diagnosis until a week later when I was admitted into the hospital for blood/ fluids /testing / bone marrow exam/ to start chemo.
at diagnosis my M-spike was 98 g/l. so quite high
In terms of Myeloma, especially an early plasma disorder the three weeks wating won't make a big difference, since this is a life long condition!
My own diagnosis took probably three years! but I am a rare myeloma patient who was sick since I was 29, but not diagnosed until I was 32. I kept going to Dr's but my symptoms all seemed to be different things and no one did the protein tests!
I ended up getting critically ill from being very anemic, and was sent to the ER after fainting with an irregular heart beat. ER doctor realized something was very wrong with my blood and ordered all the Myeloma tests. Didn't get my official diagnosis until a week later when I was admitted into the hospital for blood/ fluids /testing / bone marrow exam/ to start chemo.
at diagnosis my M-spike was 98 g/l. so quite high
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: How long does it take for a multiple myeloma diagnosis?
Hi kjpoppit - those first few weeks to months once you learn you have an m spike can be frustrating. Appears most oncologists on the first referral visit will order a new blood test, 24 hour urine test, xrays/scans, and a bone marrow aspiration. I learned I had an m spike in early Nov from my endocrinologist, visited the oncologist in early Dec, did more tests, had a bone marrow aspiration (BMA) in early Jan, and diagnosed with MGUS in mid Jan. The testing is a long process and hard not to worry. Good your urine test came back positive. Take care, Diane
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Dianem
Re: How long does it take for a multiple myeloma diagnosis?
Well it is good to know I am not alone in this. The waiting is hard, I just want to know now and I can start planning on how to deal with whatever it is. Part of my impatience is needing to know if I will need FMLA (Family Medical Leave Act) for myself at my job or if I can use all of my FMLA on my daughter (who just had a baby) who has been hospitalized and needs a heart valve transplant. At least hearing from someone else makes me feel better knowing this waiting is typical.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long does it take for a multiple myeloma diagnosis?
Hi - yes, the waiting is the worst and if you end up with any type of diagnosis (example - MGUS) associated with an m spike, you will be tested every 6-8 months. Unclear why it takes so long initially to see an oncologist. I live in AZ close to the Mayo Clinic that specializes in bone marrow disorders. When I called them in early Nov they could not see me till mid-Jan and no testing until after the first consultation. This is why I went to an oncologist in early Dec and she had all of the testing assessed at the Mayo. Good luck with your daughter's heart surgery. Diane
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Dianem
Re: How long does it take for a multiple myeloma diagnosis?
Mine was very quick because of a bone morrow biopsy.
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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: How long does it take for a multiple myeloma diagnosis?
It took about 3 weeks for them to put everything all together. Blood pressure issues led to a kidney biopsy The kidney biopsy led to a bone marrow biopsy. From there, we got a diagnosis. Be patient with the process. Stay on top of any symptoms that may be bothering you or could signal that you are not doing well.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: How long does it take for a multiple myeloma diagnosis?
I do have what may be symptoms but I can't be for sure. I always attributed my aches and pains to being overweight and my sleep apnea. I have been sick frequently since spring, even now I have had a cough for 4 weeks. I have pain in my left foot which is continual but sometimes worse or better depending on how long I had to stand on my feet all day. I had my back go out in the spring all because I sneezed. It took over a month and several chiropractor trips to feel better, I was out of work for a week and a half over it. I have a small ache in the middle of my back which doesn't bother me to much, but its there. Just received my latest blood work and don't know how to read it quite yet so I will wait for the doctor to call me and tell me what she thinks. So I keep on waiting and hoping for the best.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How long does it take for a multiple myeloma diagnosis?
What does your blood work look like? Are there any numbers out of range? We have gotten good in the multiple myeloma community of knowing what the numbers should look like. Feel free to post if you are comfortable and we will assist.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: How long does it take for a multiple myeloma diagnosis?
I'll try to post the necessary numbers.
ImG 536 low
ImA 5518 high
ImM 43 normal
Protein total serum is 9.4 high
Albumin and alpha globulins normal
Beta globulin is 4.3 high
M spike is 3.2 high
Globulin total is 5.6 high
Free kappa light chains 20.55 high
free lamda light chains 8.68 normal
Kappa/lamda ratio is 2.37 high
I still wait for my Dr. to call me. I got these results 4 days ago. I was told the Dr. would call me by today and I did not hear back from her.
Am I wrong to expect a little more concern or attention. Something.
Thanks for listening.
ImG 536 low
ImA 5518 high
ImM 43 normal
Protein total serum is 9.4 high
Albumin and alpha globulins normal
Beta globulin is 4.3 high
M spike is 3.2 high
Globulin total is 5.6 high
Free kappa light chains 20.55 high
free lamda light chains 8.68 normal
Kappa/lamda ratio is 2.37 high
I still wait for my Dr. to call me. I got these results 4 days ago. I was told the Dr. would call me by today and I did not hear back from her.
Am I wrong to expect a little more concern or attention. Something.
Thanks for listening.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
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