I am a 34-year old high school English teacher, and I have been suffering from pain in the ribs on my left side for 2.5 years now. The pain is most intense and tender just under my armpit, but whenever I push on any of the places where I feel pain, it will be sore for a few days. The pain is the worse when I am sitting upright or lifting anything.
2.5 years ago, my PCP thought it might be from a swollen spleen. She did an x-ray and the only thing they found was a semi-backed up colon on that side. I was on Miralax for 5 days to alleviate that problem. But the pain did not go away. I was then sent to see a lower-GI specialist on the off-hand chance I had problems in my colon. They found a trace amount of blood in the stool test and opted to do a colonoscopy. The test came out fine. The pain continued.
I continued to workout as much as I could, but I felt myself becoming more fatigued. I haven't been able to do the things I used to because I just don't have the energy. I also have hypothyroidism and I take Synthroid and Cytomel for that. Sometimes my doctor attributes the fatigue to my thyroid issue.
2 years ago, I was then sent to an upper-GI doctor who was quite confident that it wasn't anything involving my stomach or upper GI area. He was convinced it was costochondritis. He ordered a rib x-ray, which came out fine, but put me on a daily, low-dose of aspirin (Mobic) and Prilosec to counteract the effects of the Mobic. The pain seemed to be a little better while I was on those pills. But after a year, I decided to get off of them because I didn't want to be on something for so long without knowing the true cause of the pain.
I stopped taking the Mobic and the pain returned and was as bad as it was before, maybe a little more intense. I haven't been able to work out much since then because of the pain in my ribs.
I decided to just pretend it wasn't there and move on. But, it is always there. I let my doctor know a few weeks ago that it was still there. It hurts when my kids hug me sometimes, or even when being embraced by a lover. It is very tender.
In addition, I have low vitamin D, low iodine, and last May, for the first time, a blood test revealed that I have low iron. I have never before had low iron. I am currently taking Kelp for iodine, vitamin D, Vitamin B12, and Iron and Vitamin C. As well as a slightly higher dose of Synthroid and the same dose of Cytomel. I also take Zoloft. My hair has also been falling out (thinning) constantly for about 5 months now with no explanation. I am constantly worn out.
My PCP decided to refer me to an osteopathic doctor whom I saw a few weeks ago. He pinpointed the area of the most tenderness, just under my armpit, which he said was also swollen, and also did a breast exam to eliminate that as a possibility. The breast was fine. He said there was a possibility it was shingles (without the rash) and gave me a script for Valtrex. I just finished the Valtrex and it made absolutely no difference.
He then set me up to have a bone scan. The bone scan was negative. I went back to see him last week and he is now convinced that it is all in my head--that the stress of life is causing the pain, not any underlying disease, etc. He said that the bone scan was to check for metastasis, and he can now rule cancer out. He did some osteopathic manipulations that day to pacify me, but those only made the pain worse afterwards. I tried lifting light weights the other night and had to stop because of the pain in raising the weight on my left side. He said he knows that it is not in the muscle and is not mechanical.
I also know that some bone lesions do not show up on bone scans, specifically lytic bone lesions, as seen in multiple myeloma.
I feel like a test like an MRI or CT or even a more comprehensive blood test could see the things that he seems to think are merely in my head. I know something is going on in my ribs. It is a constant nagging feeling.
So...I have chronic rib pain, fatigue, low iron, low iodine, thinning hair, and now a bit of depression at no definitive diagnosis.
I used to be a division I college athlete. Now I can hardly workout at all.
Could this be multiple myeloma?
Forums
Re: Could it be Multiple Myeloma?
If you truly suspect myeloma, a quick review of your comprehensive metabolic panel and CBC (you've probably had these done as part of a standard physical exam and these will be in your chart already) may give you a hint if your globulin or protein levels are elevated. These are by no means definitive indicators of myeloma, but if one of these factors are elevated, or if you are showing high calcium levels, any anemia ( HGB, RBC and/or hematocrit ouf of range) or kidney issues (BUN or creatinine out of range), it would make sense to get the other standard blood/urine tests for myeloma. These aforementioned items in these panels are what docs pick up on if they are a smart enough to catch myeloma during a routine physical and you are feeling no symptoms.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be Multiple Myeloma?
I'm not a doctor, but with your symptoms it doesn't sound like multiple myeloma is something you should worry about. If for no other reason I don't believe you would be stable in your symptoms if the pain of 2 1/2 years was a tumor.
-
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: Could it be Multiple Myeloma?
Hi .. if you have had the bone scans done, then another set of tests are the specialized blood tests such as the protein electrophoreses (SPEP) and also the serum free light chain test (FLC). Probably if you are this concerned about myeloma, it would be best to get an app't with a haematological oncologist, who could determine if you have it, or a precursor condition such as MGUS, or SMM. Hope that helps!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Could it be Multiple Myeloma?
Nancy Shamanna wrote:
Hi .. if you have had the bone scans done, then another set of tests are the specialized blood tests such as the protein electrophoreses (SPEP) and also the serum free light chain test (FLC). Probably if you are this concerned about myeloma, it would be best to get an app't with a haematological oncologist, who could determine if you have it, or a precursor condition such as MGUS, or SMM. Hope that helps!
-----
Nancy is right. My earlier suggestion was just a quick and dirty way to get an idea from your currently available tests if you "may" have some stage of myeloma. Nancy's approach would answer the question definitively with no guesswork.,
BTW, Xrays don't always pick up on bone lesions. There are potentially a surprising number of smoldering myeloma (a precursur stage) patients that are misdiagnosed since they in fact have bone lesions (which would escalate them from a smoldering to a multiple myeloma stage diagnosis).
In one recent study, a significant number of smoldering patients (~30%) who were planning to participate in a clinical trial for smoldering patients could not participate because they were found through CT and PET-CT scans to have bone lesions, despite their previously being classified as smoldering based on xrays and blood tests alone.
See page 21 of this slide deck (page title: "Increased FDG PET-CT bone marrow uptake prior therapy") for more details.
So, since you know where your pain is, it might also be prudent to ask for an MRI of that region.
Hi .. if you have had the bone scans done, then another set of tests are the specialized blood tests such as the protein electrophoreses (SPEP) and also the serum free light chain test (FLC). Probably if you are this concerned about myeloma, it would be best to get an app't with a haematological oncologist, who could determine if you have it, or a precursor condition such as MGUS, or SMM. Hope that helps!
-----
Nancy is right. My earlier suggestion was just a quick and dirty way to get an idea from your currently available tests if you "may" have some stage of myeloma. Nancy's approach would answer the question definitively with no guesswork.,
BTW, Xrays don't always pick up on bone lesions. There are potentially a surprising number of smoldering myeloma (a precursur stage) patients that are misdiagnosed since they in fact have bone lesions (which would escalate them from a smoldering to a multiple myeloma stage diagnosis).
In one recent study, a significant number of smoldering patients (~30%) who were planning to participate in a clinical trial for smoldering patients could not participate because they were found through CT and PET-CT scans to have bone lesions, despite their previously being classified as smoldering based on xrays and blood tests alone.
See page 21 of this slide deck (page title: "Increased FDG PET-CT bone marrow uptake prior therapy") for more details.
So, since you know where your pain is, it might also be prudent to ask for an MRI of that region.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be Multiple Myeloma?
Just a few quick follow-ups on some of the issues being discussed here ...
First, in regard to the study Multibilly mentioned, it's worth pointing out that at the time its results were reported, the sample was rather small -- 10 patients had been enrolled in the study at that point. That would suggest the "30 percent of patients were misclassfied as smoldering" statistic is based on a handful of patients.
Second, there has been a broader study using whole body MRI in smoldering myeloma patients that found that about 30 percent of the patients had lesions in their bone marrow. These lesions were most likely the initial stages of myeloma cells building up in the marrow. Here's the Beacon's review of that study:
Bone Lesions Detected By MRI Can Predict Progression Of Smoldering Myeloma
Third, it's important to understand that different imaging techniques pick up on different kinds of bone lesions. Xrays and CT scans will mainly pick up lesions in the hard exterior of the bones -- i.e., bone damage that also could be reflected in elevated calcium levels in the blood.
MRI, on the other hand, will mainly pick up lesions in the bone marrow (which most likely are growing collections of myeloma cells).
PET-CT, like CT, is more oriented to the hard exterior of the bone as well, but also may pick up bone marrow lesions.
All of these lesions are good to know about, but they are different from one another.
(We should mention that the information we just shared about what can be picked up through different kinds of imaging is courtesy of Dr. Ola Landgren at the NIH/NCI, with whom we recently discussed these issues.)
First, in regard to the study Multibilly mentioned, it's worth pointing out that at the time its results were reported, the sample was rather small -- 10 patients had been enrolled in the study at that point. That would suggest the "30 percent of patients were misclassfied as smoldering" statistic is based on a handful of patients.
Second, there has been a broader study using whole body MRI in smoldering myeloma patients that found that about 30 percent of the patients had lesions in their bone marrow. These lesions were most likely the initial stages of myeloma cells building up in the marrow. Here's the Beacon's review of that study:
Bone Lesions Detected By MRI Can Predict Progression Of Smoldering Myeloma
Third, it's important to understand that different imaging techniques pick up on different kinds of bone lesions. Xrays and CT scans will mainly pick up lesions in the hard exterior of the bones -- i.e., bone damage that also could be reflected in elevated calcium levels in the blood.
MRI, on the other hand, will mainly pick up lesions in the bone marrow (which most likely are growing collections of myeloma cells).
PET-CT, like CT, is more oriented to the hard exterior of the bone as well, but also may pick up bone marrow lesions.
All of these lesions are good to know about, but they are different from one another.
(We should mention that the information we just shared about what can be picked up through different kinds of imaging is courtesy of Dr. Ola Landgren at the NIH/NCI, with whom we recently discussed these issues.)
Re: Could it be Multiple Myeloma?
Thanks Beacon Staff! Nice follow up.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be Multiple Myeloma?
Thank you for all of the helpful information and resources.
Did anyone of you have similar bone pain issues? Did anyone else have a long road to diagnosis, plagued by misdiagnosis?
Did anyone of you have similar bone pain issues? Did anyone else have a long road to diagnosis, plagued by misdiagnosis?
-
ToughTeacher
Re: Could it be Multiple Myeloma?
Definitely many of us myeloma patients have had bone pain, that went undiagnosed as myeloma for awhile. i guess that is why when I read your posting, I think it might be prudent to follow it up with blood tests. Even an albumin protein test would show if you have elevated levels of protein in your blood. Excess light weight antibody type protein is spewed off by the mutant plasma cells. Multiple myeloma is often undiagnosed until a lot of damage occurs.
Hope you don't have any sort of cancer though…good luck and maybe get some more testing done!
I realize that with SMM or MGUS, probably you wouldn't have bone pain, by definition!
Hope you don't have any sort of cancer though…good luck and maybe get some more testing done!
I realize that with SMM or MGUS, probably you wouldn't have bone pain, by definition!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Could it be Multiple Myeloma?
There was a long discussion recently here in the forum with stories about different people's diagnoses. Here's the link:
https://myelomabeacon.org/forum/my-multiple-myeloma-curveball-t2463.html
The advice you've received from previous posters is worth following. The blood and urine tests are the easiest to do and probably the first thing you should try to have done.
https://myelomabeacon.org/forum/my-multiple-myeloma-curveball-t2463.html
The advice you've received from previous posters is worth following. The blood and urine tests are the easiest to do and probably the first thing you should try to have done.
30 posts
• Page 1 of 3 • 1, 2, 3