Hey everybody!
My name's Matt, and I'm not sure whether I'm going to be a permanent resident here, so I'd like to find out some more info from anyone who's willing to share. I'm 25, and I'm in the worst condition of my life as of today versus ~2 months ago, when I was in the literal best condition of my life.
Anyways, here's my story. Last year, around November 14, I developed a dry cough, which is still present with me to this day. I cough probably 3-4 times a day now. December 2nd, after a game of soccer, I lost my appetite. My appetite still comes and goes. A few days after I lost my appetite, I started seeing a PCP for what was going on.
Following the loss of appetite, I started getting strange pains in places. It started with my shoulder / scapula, and my hips. As time went on, I started to feel it in my left leg. The sensation started as almost feeling a knot in my knee, like there's a ball there. It was uncomfortable, but nothing unpleasant. A couple weeks later, it turned very painful, and I can feel it in my thigh. It hurts to the point where if I'm resting my thigh on something, it aches. I'm walking with a cane now. I also have a soft spot on my left ribs; I'm not able to sleep on my left side anymore.
I had a bone scan performed on me (December 28), which showed mild uptake in my shins, and a larger uptake in my hands, which have since started to bother me. I'm assuming they feel like what hands with arthritis would feel like. They aren't red or inflamed, though.
I've also been having night sweats which started near the end of 2016, which is what my PCP referred me to an oncologist / hematologist for in the first place.
Here's my blood results:
WBC 5.9 (3.5 - 10.1 bil/L)
RBC 5.32 (4.31 - 5.48 tril/L)
Hemoglobin 16.8 (13.5 - 17.0 g/dL)
Platelet 286 (150 - 400 bil/L)
Lymphocytes 1.9 (1.1 - 4.0 bil/L)
Kappa FLC 1.10 (0.33 - 1.94 mg/dL)
Lambda FLC 1.04 (0.57 - 2.63 mg/dL)
K/L FLC Ratio 1.06 (0.26 - 1.65)
Albumin 5.12 (3.42 - 4.86 g/dL)
Alpha 1 0.24 (0.22 - 0.41 g/dL)
Alpha 2 0.68 (0.55 - 1.09 g/dL)
Beta 0.88 (0.53 - 1.01 g/dL)
Gamma 0.88 (0.80 - 1.65 g/dL)
IgG 824 (520 - 1560 mg/dL)
IgA 436 (88 - 374 mg/dL)
IgM 101 (47 - 206 mg/dL)
* no monoclonal proteins detected (blessing, or a curse)
B12 1155 (271 - 870 pg/mL)
Folate >24 (>5.4 ng/mL)
Iron 72 (45 - 160 mcg/dL)
TIBC 323 (228 - 417 mcg/dL)
Saturation 22 % (15-55%)
Calcium 10.2 (8.4-10.4)
Creatinine 0.91 (0.6-1.4)
All things considered, most things look decent at this point. I have elevated albumin, with an albumin/globulin ratio of 1.8. My calcium is near the high end (and has progressively raised each blood test since beginning of December). My iron saturation seems to be on the low end, but still relatively okay. No proteins were detected, but I do have elevated IgA. Free chains, platelets, RBC/WBC all look normal so far.
My next steps are a skeletal survey, which I'm nervous to do for 2 reasons: First, I hate standing / walking right now, which is a stark contrast from my previous self, which included soccer a few nights a week. And, second, I'm nervous about whether it'll reveal something or not. Either way is going to be upsetting I feel! I'm also getting a stomach ultrasound. Both these are happening on January 19, 2017.
Any thoughts would be appreciated.
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Do I have nonsecretory multiple myeloma?
Last edited by mackontire on Tue Jan 17, 2017 4:34 pm, edited 1 time in total.
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mackontire - Name: Matt
Re: Do I have nonsecretory multiple myeloma?
Hi Matt,
From the results you've shared, I'd say it's unlikely that you have multiple myeloma of any sort, secretory or nonsecretory.
If nonsecretory multiple myeloma was at the root of the problems you're experiencing, you would think that your hemoglobin would be suppressed, and that you'd also have low immunoglobulin levels. This would come about because the myeloma cells in your bone marrow would be reducing the ability of the marrow to produce the cells that carry hemoglobin and the healthy plasma cells that produce normal (polyclonal) immunoglobulins.
Instead, you've got an elevated IgA level, but the elevation is polyclonal in nature, because you're not showing the presence of any monoclonal protein (you say "no monoclonal proteins detected").
Yes, you're calcium level is on the high end, but it's still within range, and simple factors such as diet can cause your calcium level to bounce around.
Given your elevated IgA level and the symptoms you've described, I suspect the root of your problem is more likely to be an autoimmune disorder such as rheumatoid arthritis.
What sort of bone scan did you have performed in December? Was it a PET scan? It seems that way from the way you describe the results. If so, that really should have shown whether or not there's any sign of myeloma being at the root of your symptoms. The additional imaging work will be useful, but I would expect a PET scan to show rather clearly in a case such as yours whether myeloma is the root of the problem.
In any case, good luck with the additional scans you're having done, and please get back to us to let us know what you find out.
From the results you've shared, I'd say it's unlikely that you have multiple myeloma of any sort, secretory or nonsecretory.
If nonsecretory multiple myeloma was at the root of the problems you're experiencing, you would think that your hemoglobin would be suppressed, and that you'd also have low immunoglobulin levels. This would come about because the myeloma cells in your bone marrow would be reducing the ability of the marrow to produce the cells that carry hemoglobin and the healthy plasma cells that produce normal (polyclonal) immunoglobulins.
Instead, you've got an elevated IgA level, but the elevation is polyclonal in nature, because you're not showing the presence of any monoclonal protein (you say "no monoclonal proteins detected").
Yes, you're calcium level is on the high end, but it's still within range, and simple factors such as diet can cause your calcium level to bounce around.
Given your elevated IgA level and the symptoms you've described, I suspect the root of your problem is more likely to be an autoimmune disorder such as rheumatoid arthritis.
What sort of bone scan did you have performed in December? Was it a PET scan? It seems that way from the way you describe the results. If so, that really should have shown whether or not there's any sign of myeloma being at the root of your symptoms. The additional imaging work will be useful, but I would expect a PET scan to show rather clearly in a case such as yours whether myeloma is the root of the problem.
In any case, good luck with the additional scans you're having done, and please get back to us to let us know what you find out.
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JimNY
Re: Do I have nonsecretory multiple myeloma?
Thanks for the reply, Jim!
It sure does seem that way with my current blood panels, as they don't indicate anything out of the ordinary. I mean, what are the chances that the hypothetical multiple myeloma could cause this much damage with my blood work looking so good? Seems like I've only got the 'B' part of the CRAB equation. I'm beginning to think all of this is just in my mind and I'm going a little crazy. It's never too early for a mid-life crisis, is it?
In any case, I decided to read some reports of people with rheumatoid arthritis to see if I matched up with any of their first symptoms, and it seems like I might be shooting blanks there. I would love for that to be the case, but I don't have much joint pain – most of it is on specific parts of my bone, such as my ribs and my thigh bone, or thigh soft tissue, or thigh something another, which is what's warranting my use of a cane right now. My knees mostly feel great though ... at least for now they do, fingers crossed
I'll post another update once I get the results of the x-rays back.
It sure does seem that way with my current blood panels, as they don't indicate anything out of the ordinary. I mean, what are the chances that the hypothetical multiple myeloma could cause this much damage with my blood work looking so good? Seems like I've only got the 'B' part of the CRAB equation. I'm beginning to think all of this is just in my mind and I'm going a little crazy. It's never too early for a mid-life crisis, is it?
In any case, I decided to read some reports of people with rheumatoid arthritis to see if I matched up with any of their first symptoms, and it seems like I might be shooting blanks there. I would love for that to be the case, but I don't have much joint pain – most of it is on specific parts of my bone, such as my ribs and my thigh bone, or thigh soft tissue, or thigh something another, which is what's warranting my use of a cane right now. My knees mostly feel great though ... at least for now they do, fingers crossed
I'll post another update once I get the results of the x-rays back.
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mackontire - Name: Matt
Re: Do I have nonsecretory multiple myeloma?
Hi Matt,
The x-rays definitely will be useful. Also, I wouldn't yet rule out the possibility of some sort of autoimmune disorder as the source of the elevated IgA. Or it might be caused by an infection.
Have you and your doctors investigated the possibility that you might have Lyme disease, or something similar?
Finally, I'm not sure I understand the conclusion that meet the "B" criterion in the "CRAB" criteria for a multiple myeloma diagnosis. The "B" stands for bone lesions, specifically "one or more osteolytic lesions on skeletal radiography, CT, or PET-CT". Have your doctors found evidence of bone lesions?
In any case, good luck, and do let us know what you find out.
The x-rays definitely will be useful. Also, I wouldn't yet rule out the possibility of some sort of autoimmune disorder as the source of the elevated IgA. Or it might be caused by an infection.
Have you and your doctors investigated the possibility that you might have Lyme disease, or something similar?
Finally, I'm not sure I understand the conclusion that meet the "B" criterion in the "CRAB" criteria for a multiple myeloma diagnosis. The "B" stands for bone lesions, specifically "one or more osteolytic lesions on skeletal radiography, CT, or PET-CT". Have your doctors found evidence of bone lesions?
In any case, good luck, and do let us know what you find out.
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JimNY
Re: Do I have nonsecretory multiple myeloma?
I agree with Jim. The "B" in CRAB specifically means lytic lesions due to multiple myeloma and not generalized bone pain or joint issues. But I'm guessing since you are now getting a skeletal survey that you had a nuclear bone scan (bone scintigraphy) performed earlier. Bone scintigraphy is not at all good at picking up myeloma lesions. If you instead had a PET/CT, that would usually negate the need for a follow-up skeletal survey, since any myeloma lesions would have popped out like Christmas lights in the dark on the PET/CT scan results.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do I have nonsecretory multiple myeloma?
Thanks for the replies, both of you. It was indeed a bone scintigraphy. It sounds like the tracer only binds to portions of the bone where there's growth (tumerous bone cancer, or repairing a broken bone), as opposed to decay (leeching calcium)?
That's a little unfortunate. I may have been able to change my outcome a bit had I went with a PET/CT scan before, but I'm still in the dark as to what's happening to me. Many of the places I have pain did NOT show up on the bone scan, as I think I mentioned – my ribs, specifically, as well as my shoulder and my knee/thigh.
If it would help to describe my bone pain, it feels like certain bones – thigh / shoulder / left ribs – are structurally unsound. If I carry a backpack, my shoulder will have a dull ache in it for a little bit afterwards. If I rest my leg on the edge of my chair, it ends up aching, although the knee itself is fine, and I have no loss of range of motion with it. However, I need to rest after walking for a couple minutes, or my leg ends up hurting too much. Hard to believe as I was able to play soccer for ~25 minutes at a time 50 days ago. I miss those times.
My back has also starting to get a little sore, just from sitting at work and everyday activities. I don't know if this is because I've stopped my workout routine, or what. It does feel more spinal-related than anything. Previously if my back 'hurt', it would be sore muscles. I don't recall my spine ever feeling strange, or hurt.
The skeletal survey is later today. I know you all can't diagnose me, but I'm trying my best to get some sort of diagnosis, and it's nice to have people at least read my account and offer their advice. As I said before, it would seem crazy to think I have multiple myeloma at this point. Only thing that points to it is 'painful bones' as of right now. I'm 25, there's no M-protein, normal light chains, high hemoglobin. Everything points to good health right now.
I'll keep you guys posted.
That's a little unfortunate. I may have been able to change my outcome a bit had I went with a PET/CT scan before, but I'm still in the dark as to what's happening to me. Many of the places I have pain did NOT show up on the bone scan, as I think I mentioned – my ribs, specifically, as well as my shoulder and my knee/thigh.
If it would help to describe my bone pain, it feels like certain bones – thigh / shoulder / left ribs – are structurally unsound. If I carry a backpack, my shoulder will have a dull ache in it for a little bit afterwards. If I rest my leg on the edge of my chair, it ends up aching, although the knee itself is fine, and I have no loss of range of motion with it. However, I need to rest after walking for a couple minutes, or my leg ends up hurting too much. Hard to believe as I was able to play soccer for ~25 minutes at a time 50 days ago. I miss those times.
My back has also starting to get a little sore, just from sitting at work and everyday activities. I don't know if this is because I've stopped my workout routine, or what. It does feel more spinal-related than anything. Previously if my back 'hurt', it would be sore muscles. I don't recall my spine ever feeling strange, or hurt.
The skeletal survey is later today. I know you all can't diagnose me, but I'm trying my best to get some sort of diagnosis, and it's nice to have people at least read my account and offer their advice. As I said before, it would seem crazy to think I have multiple myeloma at this point. Only thing that points to it is 'painful bones' as of right now. I'm 25, there's no M-protein, normal light chains, high hemoglobin. Everything points to good health right now.
I'll keep you guys posted.
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mackontire - Name: Matt
Re: Do I have nonsecretory multiple myeloma?
Just wanted to follow up with everyone here. Seems to be that there's pretty much no chance that I have multiple myeloma, which is nice, I suppose. I had a bone marrow biopsy done; thankfully I had an oncologist that took my symptoms seriously and did everything she could to rule myeloma and other blood disorders out.
BONE MARROW ASPIRATION (GIEMSA STAIN):
Adequacy: Adequate
Blasts: 1%
M:E ratio: 2:1
Erythropoiesis: Normoblastic maturation
Granulopoiesis: Normal ordering maturation
Thrombopoiesis: Unremarkable megakaryocytes
Plasma Cells: 1%
Lymphocytes: 10% small lymphocytes
So I'm clear!
Unfortunately, I still get occasional nightsweats, my appetite is very lacking some days, I still have bone pain in specific locations, and I have incredibly foamy urine, even when it's clear. My blood counts are good though, including WBC and RBC, and my kidney function, tested Jan 10, 2017, was pretty good.
I've had a chest CT, which was clear, a bone scintigraphy, which was clear – even in spots of pain – and a stomach ultrasound, which was clear, so having a primary cancer in those locations is probably unlikely. Only thing I haven't had is a PET scan.
The doctor mentioned that there are occasional times where things happen to people in which case there just isn't a textbook definition for. I'm hoping that's the case.
Here's to hoping I don't have to come back to these forums anymore. Although, if I do, I feel like I'll be in the right hands. See y'all on the flip side!
BONE MARROW ASPIRATION (GIEMSA STAIN):
Adequacy: Adequate
Blasts: 1%
M:E ratio: 2:1
Erythropoiesis: Normoblastic maturation
Granulopoiesis: Normal ordering maturation
Thrombopoiesis: Unremarkable megakaryocytes
Plasma Cells: 1%
Lymphocytes: 10% small lymphocytes
So I'm clear!
Unfortunately, I still get occasional nightsweats, my appetite is very lacking some days, I still have bone pain in specific locations, and I have incredibly foamy urine, even when it's clear. My blood counts are good though, including WBC and RBC, and my kidney function, tested Jan 10, 2017, was pretty good.
I've had a chest CT, which was clear, a bone scintigraphy, which was clear – even in spots of pain – and a stomach ultrasound, which was clear, so having a primary cancer in those locations is probably unlikely. Only thing I haven't had is a PET scan.
The doctor mentioned that there are occasional times where things happen to people in which case there just isn't a textbook definition for. I'm hoping that's the case.
Here's to hoping I don't have to come back to these forums anymore. Although, if I do, I feel like I'll be in the right hands. See y'all on the flip side!
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mackontire - Name: Matt
Re: Do I have nonsecretory multiple myeloma?
Hi mackontire:
So glad to see that you have ruled out multiple myeloma, and I have to agree with the others, it sounds like an autoimmune disorder to me. I only say that, not because I am an expert, but my daughter recently spent a week in the hospital before they could diagnose her lupus.
I would request more blood work, possibly an ANA and a C3/C4 test. Lupus can take years to diagnose, it's almost a diagnosis of last resort. A lot of times they have to disprove it is something else. There are specific tests for lupus, so I assume there are also blood tests for rheumatoid arthritis. I would definitely recommend that you speak with your PCP or go to a rheumatologist.
Don't give up until you get answers. Best of luck.
Kathleen
So glad to see that you have ruled out multiple myeloma, and I have to agree with the others, it sounds like an autoimmune disorder to me. I only say that, not because I am an expert, but my daughter recently spent a week in the hospital before they could diagnose her lupus.
I would request more blood work, possibly an ANA and a C3/C4 test. Lupus can take years to diagnose, it's almost a diagnosis of last resort. A lot of times they have to disprove it is something else. There are specific tests for lupus, so I assume there are also blood tests for rheumatoid arthritis. I would definitely recommend that you speak with your PCP or go to a rheumatologist.
Don't give up until you get answers. Best of luck.
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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