I would ask your family Dr. to run the blood work to "screen" for Myeloma. It is a straight forward blood test called a SPEP. The result takes a few days and is performed by a lab tech (not the computer) so it needs to get send to the lab. Since my diagnosis, my family Dr. says she has started ordring this test more frequently when patients have a host of weird symptoms and no answers, "just in case" since it was such a rare diagnosis for me. No one has been diagnosed with multiple myeloma the last time I saw her, though one peron was diagnosed with MGUS. (I have no switched Dr's, and with my new Dr. there is only one other multiple myeloma patient and he is much older then me, and more typical myeloma patient)
You say you are a 34 year old teacher, so that makes you around my age, I had just turned 32 when I was diagnosed, the youngest ever at the hospital I was initially treated at. Less then 1% of patients are 30 years old with this cancer, so it would be a rare diagnosis for you. That said there are quite a few young folks on the beacon living with multiple myeloma, so the stats may be changing.
Forums
Re: Could it be Multiple Myeloma?
I was diagnosed at age 34 after months of unusual bone pain and two broken ribs. I had to make my way to an orthopedic oncologist, a move I pushed for after not accepting the answers other doctors tried to give me. The orthopedic oncologist was convinced it was not going to be myeloma, but after doing a routine CT scan he was able to see the extent of the lesions (some very large, but which did not show up so extensively on a bone scan or x-rays). Even the serum protein electrophoresis came back negative (because I am hyposecretory). My diagnosis was confirmed by a fine needle aspiration of a lesion, a bone marrow biopsy, and a serum free light chain assay.
If you are not satisfied with what the doctors are telling you, find a new doctor!
Good luck!
If you are not satisfied with what the doctors are telling you, find a new doctor!
Good luck!
-
JProesch
Re: Could it be Multiple Myeloma?
[quote="Lys2012"]I would ask your family Dr. to run the blood work to "screen" for Myeloma. It is a straight forward blood test called a SPEP.
If you are going to get screened for multiple myeloma, you want to do the full battery of serum and urine tests, not just an SPEP. Most of the time, an SPEP will provide a clue about the disease, but you can still have multiple myeloma and have it not show up in your SPEP (the multiple myeloma can be expressed as only freelite chains and this happens in about 15% of cases...so you need the other tests to find this situation since the SPEP doesn't measure freelite chains...besides if you do have any stage of multiple myeloma, the rest of the tests are very helpful in the overall diagnosis). There are also the non-secretory situations like JProesch mentioned where neither an M-Spike nor freelite chains will show up in any of the blood/serum tests and the disease is only contained within your bones (downright sneaky).
I would suggest:
1. Take a peek at your protein, globulin and albumin levels on your existing metabolic panels for a possible hint (these can look normal if you have multiple myeloma, but it is fairly likely that you will see one of more of these values elevated if you have multiple myeloma). You can request a copy of this test from your doc's office if you don't already have it. If you are like me, you would want a potential hint sooner than later.
2. If your are going to get screened, get the full battery of multiple myeloma serum and urine tests (see Laboratory Tests here http://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1 )
3. If #2 is positive for some stage of multiple myeloma, then you would want to get a PET/CT scan and you would get a bone marrow biopsy as well.
4. If #2 is negative and you still suspect multiple myeloma, you would still get a PET/CT and/or bone marrow biopsy to see if you had non-secretory form of multiple myeloma (this only happens in about 5% of multiple myeloma cases, but it happens as it obviously did to JProesch).
Hope this helps.
If you are going to get screened for multiple myeloma, you want to do the full battery of serum and urine tests, not just an SPEP. Most of the time, an SPEP will provide a clue about the disease, but you can still have multiple myeloma and have it not show up in your SPEP (the multiple myeloma can be expressed as only freelite chains and this happens in about 15% of cases...so you need the other tests to find this situation since the SPEP doesn't measure freelite chains...besides if you do have any stage of multiple myeloma, the rest of the tests are very helpful in the overall diagnosis). There are also the non-secretory situations like JProesch mentioned where neither an M-Spike nor freelite chains will show up in any of the blood/serum tests and the disease is only contained within your bones (downright sneaky).
I would suggest:
1. Take a peek at your protein, globulin and albumin levels on your existing metabolic panels for a possible hint (these can look normal if you have multiple myeloma, but it is fairly likely that you will see one of more of these values elevated if you have multiple myeloma). You can request a copy of this test from your doc's office if you don't already have it. If you are like me, you would want a potential hint sooner than later.
2. If your are going to get screened, get the full battery of multiple myeloma serum and urine tests (see Laboratory Tests here http://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1 )
3. If #2 is positive for some stage of multiple myeloma, then you would want to get a PET/CT scan and you would get a bone marrow biopsy as well.
4. If #2 is negative and you still suspect multiple myeloma, you would still get a PET/CT and/or bone marrow biopsy to see if you had non-secretory form of multiple myeloma (this only happens in about 5% of multiple myeloma cases, but it happens as it obviously did to JProesch).
Hope this helps.
Last edited by Multibilly on Thu Nov 07, 2013 2:27 pm, edited 4 times in total.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be Multiple Myeloma?
Have you been to see a rheumatologist? I have lupus and fibromyalgia, and I have the same rib pain, swollen lymph nodes and fatigue you describe. It can be very difficult to get a diagnosis for autoimmune diseases, especially fibro, and patients are often dismissed and told their pain is all in their head.
My husband was diagnosed with multiple myeloma at 41. A fractured pelvis is what got him in to the doctor's, but when his blood work came, there was no doubting what he had. You should definitely ask your doctor to run a complete blood panel, if only to set your mind at ease. If it's normal, a rheumatologist might be able to give you some answers.
Good luck. I truly hope you don't have Myeloma.
My husband was diagnosed with multiple myeloma at 41. A fractured pelvis is what got him in to the doctor's, but when his blood work came, there was no doubting what he had. You should definitely ask your doctor to run a complete blood panel, if only to set your mind at ease. If it's normal, a rheumatologist might be able to give you some answers.
Good luck. I truly hope you don't have Myeloma.
-
internationelle
Re: Could it be Multiple Myeloma?
Thank you all for the excellent advice about the different types of labs to request. I am stopping by my doctor's office today to retrieve a copy of my most recent labs.
Lupus was ruled out a few years ago. I had a positive ANA titer and had a test to look for lupus, which came back negative. I am not sure about arthritis, as I don't really have pain in my joints, just pain directly on the ribs, and not necessarily with any movement.
Did anyone else have a positive ANA titer or low iron when diagnosed with multiple myeloma?
Lupus was ruled out a few years ago. I had a positive ANA titer and had a test to look for lupus, which came back negative. I am not sure about arthritis, as I don't really have pain in my joints, just pain directly on the ribs, and not necessarily with any movement.
Did anyone else have a positive ANA titer or low iron when diagnosed with multiple myeloma?
-
ToughTeacher
Re: Could it be Multiple Myeloma?
My problem started in the upper spine, pain on and off and fatigue, no energy really.
In my despair I went to see a chiropractor which was a total waste of time and money.
X-rays have to be taken at least or CT-scans, done by experts. That and the appropriate blood tests will tell you what you have. After two surgeries of my spine, starting off with a singulary placmacytoma, I live with a fused spine, with chronical pain.
I live with multiple myeloma since exactly 14 years now and have been on all the treatments in the book!
Right now I am on pomalidomide and hope for the best.
I would definitely recommend to see a specialist right away to get to the bottom of what is causing the pain.
In my despair I went to see a chiropractor which was a total waste of time and money.
X-rays have to be taken at least or CT-scans, done by experts. That and the appropriate blood tests will tell you what you have. After two surgeries of my spine, starting off with a singulary placmacytoma, I live with a fused spine, with chronical pain.
I live with multiple myeloma since exactly 14 years now and have been on all the treatments in the book!
Right now I am on pomalidomide and hope for the best.
I would definitely recommend to see a specialist right away to get to the bottom of what is causing the pain.
-
Illa
Re: Could it be Multiple Myeloma?
I had gotten broken ribs on my left side somehow and was being treated for a respiratory problem. later I had cracked ribs on the right side those were diagnosed correctly. I had continuing coughing problems and was sent to a lung specialist who found that not only were the ribs in left side broken but had healed that way and He found I also had broken ribs in my right rear shoulder area. I had to have a plate put around them. I continued on not knowing anything else 1 year later after going to a chiropractor for some back problems , he took an x-ray and said I think you have a broken vertebra. the next doctor wanted a bone same and thus my diagnose of melanoma. that was two years ago having since a bone marrow transplant and doing well.
-
Big Bill
Re: Could it be Multiple Myeloma?
Hi Multibilly. Thank you, but I do not need a lecture on "non-secretory" myeloma.
I have been living with diagnsoed /treated myeloma for almost 4 years, and was undiagnosed and very sick for at least two more. I have read a lot about this disease and been educated by my doctors. Now it seems IGG is climbing its way up so we will see what my future has in store for me.
Where I live (in Canada) you can not just walk into your doctor and request a bunch of specialized myeloma blood tests (Freelights, 24 urine, bone marrow etc. etc.). GP doctors must do some initial testing (SPEP, CBC etc), and only if you get a worrisome result can you then get a consult for a specialilst for specialized tests. If you are in the US it seems you have more freedom to just call up specialists and request a bunch of myeloma "screening".
Good luck in your journey.
To the original poster:
Yes I had Iron deficiency, really bad. I had to have three iron IV treatments before my transplant. But that said, I had a bleeding disorder related to multiple myeloma and had nose and gastrointestinal bleeding for at least a year. I had three colonoscopy exams and never found the cause, only after my diagnosis did they figure it out. Originally it looked like I had MS along with inflammatory bowel disease (Chrons). But these were incorect diagnosis. My diagnosis story is very long, it literally took years to figure out I had myeloma, I saw dozens of doctors and this is mostly due to being 30 years old so no one considered multiple myeloma and I had never even heard of it before.
I have been living with diagnsoed /treated myeloma for almost 4 years, and was undiagnosed and very sick for at least two more. I have read a lot about this disease and been educated by my doctors. Now it seems IGG is climbing its way up so we will see what my future has in store for me.
Where I live (in Canada) you can not just walk into your doctor and request a bunch of specialized myeloma blood tests (Freelights, 24 urine, bone marrow etc. etc.). GP doctors must do some initial testing (SPEP, CBC etc), and only if you get a worrisome result can you then get a consult for a specialilst for specialized tests. If you are in the US it seems you have more freedom to just call up specialists and request a bunch of myeloma "screening".
Good luck in your journey.
To the original poster:
Yes I had Iron deficiency, really bad. I had to have three iron IV treatments before my transplant. But that said, I had a bleeding disorder related to multiple myeloma and had nose and gastrointestinal bleeding for at least a year. I had three colonoscopy exams and never found the cause, only after my diagnosis did they figure it out. Originally it looked like I had MS along with inflammatory bowel disease (Chrons). But these were incorect diagnosis. My diagnosis story is very long, it literally took years to figure out I had myeloma, I saw dozens of doctors and this is mostly due to being 30 years old so no one considered multiple myeloma and I had never even heard of it before.
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Could it be Multiple Myeloma?
Lys2012 wrote:
Hi Multibilly. Thank you, but I do not need a lecture on "non-secretory" myeloma ... If you are in the US it seems you have more freedom to just call up specialists and request a bunch of myeloma "screening".
- - - - - - -
Didn't mean to lecture, nor offend. In the US, there is indeed a lot of flexibility in what tests can be ordered up front. Good luck to you as well.
Hi Multibilly. Thank you, but I do not need a lecture on "non-secretory" myeloma ... If you are in the US it seems you have more freedom to just call up specialists and request a bunch of myeloma "screening".
- - - - - - -
Didn't mean to lecture, nor offend. In the US, there is indeed a lot of flexibility in what tests can be ordered up front. Good luck to you as well.
-
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 stopped in an picked up a copy of my latest lab results from blood work (August 23, 2013). But unfortunately, it was just a CBC, plus a Total T4, Free T4, iodine, vitamin D, and iron tests.
Therefore, I couldn't glean much helpful information from those, besides the low iron.
So I called my doctor's office and left a message asking if they could order a Comprehensive Metabolic Panel, which will at least show the protein and calcium levels.
As far as I know, I haven't had a test like that in possibly a year to a year and a half.
Therefore, I couldn't glean much helpful information from those, besides the low iron.
So I called my doctor's office and left a message asking if they could order a Comprehensive Metabolic Panel, which will at least show the protein and calcium levels.
As far as I know, I haven't had a test like that in possibly a year to a year and a half.
-
ToughTeacher
30 posts
• Page 2 of 3 • 1, 2, 3