This will be the first official visit with a doctor in regards to the initial findings of the lesions after my wreck. I am seeing a new PCP for routine blood tests and a well check and to go over the concerns from the x-ray / CT-scan and MRI findings and then go from there. So this is really my first big step in finding out why I hurt, am tired, have constant sinus infections, flu, colds.
My best wishes to everyone in this forum and beyond. May God be with you and your families as you deal with your illness. My prayers are with you all.
Forums
Re: Multiple bone lesions - normal blood tests
It has been awhile since I last posted. I am still stuck in limbo. Routine blood tests still look good. However, I am to see a kidney specialist April 4, after a trip to my primary for abdominal pains and a CT scan it was found my kidneys are not emptying and are remaining full. My urine is foamy (I have heard this is a sign of protein in your urine; is that true?). I continue to have a sinus infection, catch every cold that comes around, have had my third bout with the flu in 2 years, yet not other blood work up or biopsy of the lesions. Does it normally take so long to rule everything out before something that seems like a simple thing to do is done?
I am beginning to think I am a hypochondriac or something. I just want answers to why I hurt, why I am always sick, why I am so fatigued. The pain keeps me from being able to hold and play with my grandchildren.
I am just scared. Seems something could be done sooner instead of chasing all these little things that keep popping up with each visit to the doc.
Can you have multiple myeloma and your routine blood work stay in normal range?
I am beginning to think I am a hypochondriac or something. I just want answers to why I hurt, why I am always sick, why I am so fatigued. The pain keeps me from being able to hold and play with my grandchildren.
I am just scared. Seems something could be done sooner instead of chasing all these little things that keep popping up with each visit to the doc.
Can you have multiple myeloma and your routine blood work stay in normal range?
-
CynthiaK
Re: Multiple bone lesions - normal blood tests
Cynthia,
In a nut, one's metabolic panel and CBC blood tests can look fairly normal and you can still have a monoclonal gammopathy.
The key initial tests for detecting a monoclonal gammopathy are those pointed out by Cheryl in her earlier post:
https://myelomabeacon.org/forum/multiple-bone-lesions-normal-blood-tests-t6522.html#p38921
I'd also be requesting a set of quantified immunoglobulin tests (IgG, IgA, IgM) if you are picking up a lot of infections.
Have you had any of the above tests performed yet?
And yes, foam in one's urine can sometimes be a sign of protein in one's urine (proteinuria)..
Also, if you are feeling fatigued, the first I would be looking at would be your red blood cell (RBC) and hemoglobin levels. Those values can be found on your CBC blood test results.
In a nut, one's metabolic panel and CBC blood tests can look fairly normal and you can still have a monoclonal gammopathy.
The key initial tests for detecting a monoclonal gammopathy are those pointed out by Cheryl in her earlier post:
https://myelomabeacon.org/forum/multiple-bone-lesions-normal-blood-tests-t6522.html#p38921
I'd also be requesting a set of quantified immunoglobulin tests (IgG, IgA, IgM) if you are picking up a lot of infections.
Have you had any of the above tests performed yet?
And yes, foam in one's urine can sometimes be a sign of protein in one's urine (proteinuria)..
Also, if you are feeling fatigued, the first I would be looking at would be your red blood cell (RBC) and hemoglobin levels. Those values can be found on your CBC blood test results.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple bone lesions - normal blood tests
I did not think MGUS had lesions associated with it? Only smoldering multiple myeloma and multiple myeloma?
This is where the confusion for me runs. It seems NO ONE is taking the lesions, the fatigue, bone pain seriously all because the blood work is normal.
Can you have smoldering multiple myeloma or multiple myeloma with normal blood work and protein only show in your urine?
This is where the confusion for me runs. It seems NO ONE is taking the lesions, the fatigue, bone pain seriously all because the blood work is normal.
Can you have smoldering multiple myeloma or multiple myeloma with normal blood work and protein only show in your urine?
-
CynthiaK
Re: Multiple bone lesions - normal blood tests
Cynthia,
It is important to understand what kind of lesions were detected on your spine. If they are osteolytic lesions (aka lytic lesions which form on the exterior of your bone), and they are attributable to a monoclonal gammopathy, then by definition you have symptomatic multiple myeloma.
If they are focal lesions (lesions on the interior of your bone), then their size becomes quite important when it comes to a diagnosis.
I would again suggest you also get the copies of the tests that Cheryl and I recommended in the previous post. If you haven't had these tests performed yet, then you should insist on your doctor running them. Otherwise, you are just going to spin your wheels on the topic of whether this might be a monoclonal gammopathy or not.
I would also suggest seeking out a myeloma specialist to end this stalemate that you seem to be caught in. There are many people here with experiences who can probably recommend a specialist near you, or you could do a road trip to UAMS in Arkansas, which is a top notch facility with many multiple myeloma specialists. If your condition is due to something other than a monoclonal gammopathy, a multiple myeloma specialist will also likely have the expertise to get to the bottom of all this.
It is important to understand what kind of lesions were detected on your spine. If they are osteolytic lesions (aka lytic lesions which form on the exterior of your bone), and they are attributable to a monoclonal gammopathy, then by definition you have symptomatic multiple myeloma.
If they are focal lesions (lesions on the interior of your bone), then their size becomes quite important when it comes to a diagnosis.
I would again suggest you also get the copies of the tests that Cheryl and I recommended in the previous post. If you haven't had these tests performed yet, then you should insist on your doctor running them. Otherwise, you are just going to spin your wheels on the topic of whether this might be a monoclonal gammopathy or not.
I would also suggest seeking out a myeloma specialist to end this stalemate that you seem to be caught in. There are many people here with experiences who can probably recommend a specialist near you, or you could do a road trip to UAMS in Arkansas, which is a top notch facility with many multiple myeloma specialists. If your condition is due to something other than a monoclonal gammopathy, a multiple myeloma specialist will also likely have the expertise to get to the bottom of all this.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple bone lesions - normal blood tests
Dear Cynthia,
I would very strongly advise you to follow Multibilly's advice - you need to contact a myeloma specialist as soon as possible and have the tests he and Cheryl mentioned done.
I suffered from slightly abnormal blood counts, as well as bone problems, starting a few years ago. But my doctor at the time did not order any further testing and I was not properly diagnosed until my symptoms dramatically worsened. By then, multiple myeloma had done a lot of damage to my body.
Don't let that happen to you! There are great treatments these days, but the earlier they are initiated in the course of the disease, the better.
I know this can be a frightening situation. But knowledge is power, and the sooner you can get a definitive set of tests done by a myeloma specialist, the better.
I would very strongly advise you to follow Multibilly's advice - you need to contact a myeloma specialist as soon as possible and have the tests he and Cheryl mentioned done.
I suffered from slightly abnormal blood counts, as well as bone problems, starting a few years ago. But my doctor at the time did not order any further testing and I was not properly diagnosed until my symptoms dramatically worsened. By then, multiple myeloma had done a lot of damage to my body.
Don't let that happen to you! There are great treatments these days, but the earlier they are initiated in the course of the disease, the better.
I know this can be a frightening situation. But knowledge is power, and the sooner you can get a definitive set of tests done by a myeloma specialist, the better.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Multiple bone lesions - normal blood tests
Thank you everyone for your posts and support. I will say I do feel I am stuck in limbo with what seems to be the "wait and see" theory of the doctors as they keep chasing down various other issues that come up instead of testing for myeloma.
I have now developed kidney insufficiency - on a recent CT scan it was discovered my kidneys were full of fluid - when I asked why this could be, all I was told was we have made an appointment with a kidney specialist to find out.
I am once again sick with a sinus infection and cold, getting bruises in various areas (with no injury or mild bump). By the end of the day, my neck and back hurt so bad and my arms and legs are numb and heavy feeling. My doctor said she is trying to find a reason to get a full body scan (x-ray, MRI) approved by the insurance as she wants to make sure they will cover before doing them (ugghhh).
I will give her a call today and insist she send me to a specialist or set up the necessary tests needed to hopefully find out why I am so sick all the time.
Again thank you all and God bless your journey and keep you healthy. You all are such a relief and needed shoulder.
I have now developed kidney insufficiency - on a recent CT scan it was discovered my kidneys were full of fluid - when I asked why this could be, all I was told was we have made an appointment with a kidney specialist to find out.
I am once again sick with a sinus infection and cold, getting bruises in various areas (with no injury or mild bump). By the end of the day, my neck and back hurt so bad and my arms and legs are numb and heavy feeling. My doctor said she is trying to find a reason to get a full body scan (x-ray, MRI) approved by the insurance as she wants to make sure they will cover before doing them (ugghhh).
I will give her a call today and insist she send me to a specialist or set up the necessary tests needed to hopefully find out why I am so sick all the time.
Again thank you all and God bless your journey and keep you healthy. You all are such a relief and needed shoulder.
-
CynthiaK
17 posts
• Page 2 of 2 • 1, 2