Hi everyone,
I am a 47 year old mother of 2 children, 7 and 8 years old. I live in Canada, and I am French Canadian. Here is my story: I have suffered from constipation for a long time. Lately, it has gotten really bad. My doctor finally decided to test me for celiac disease. The test came back negative, however, the doctor had me do a second test a month after the first because the proteins in my blood were high. When I questioned what that meant, I was told it wasn't a big deal. (Note: when I see the doctor, it is a resident who then speaks to my actual doctor; if I want to see my own doctor, It takes months, so I always see a resident, and rarely the same one.)
So: The results came back and I was sent for a 3rd blood test. When I asked what this was for, the resident told me they were 't sure exactly, they asked the hematologist and he / she recommended I go for this test. The blood test was done on November 27th, 2015. It was the serum free light chain test.
I had no idea what this was, so I looked it up and I believe that the only reason they test for this is to see if you have multiple myeloma.
Is this correct? Is the free light chain blood test only used to diagnose multiple myeloma?
And how long does it take to process and get the results?
I haven't heard anything back from my doctor. If the tests were abnormal, should I have heard by now?
I am anxious about this, so I called the doctor's office yesterday and was told I would hear back from my doctor. Only if there was something wrong. So, looking for answers, I made an appointment with my doctor to get my test results, but can't get in until December 23rd, 2015.
I don't know what to think!! Help?
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8 posts
• Page 1 of 1
Re: Are free light chain tests only for multiple myeloma?
The doctors just might be trying to rule out MGUS/myeloma, if your test results were of serious concern, the doctor would call you in.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Are free light chain tests only for multiple myeloma?
Which province are you in ?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Are free light chain tests only for multiple myeloma?
Hi little monkey, thank you for your reply. I live in New Brunswick.
I still haven't heard anything back but I am quite anxious about getting the results. I just haven't been feeling well lately and I had no idea they were trying to rule out anything like this. I keep telling myself that if there was something wrong, i would have heard back by now, unless they are trying to reach a specialist or get me in with the hematologist. Or, everything is just fine and there is nothing wrong...?
'
Here is another question: I have weird purple spots (rash?) that appear from time to time, one at a time, and eventually disappears. It can be the size of a small pea or smaller. It is dark purple and takes weeks to disappear. And eventually, I get another one on a different spot, but always in my forearms. I finally took pictures so I could show my dr and she was baffled and had never seen that before. So she reffered me to a hematology. Has anyone with multiple myeloma had these?
Anyhow, it's a waiting game right now.
'
Any feedback is appreciated.
'
I still haven't heard anything back but I am quite anxious about getting the results. I just haven't been feeling well lately and I had no idea they were trying to rule out anything like this. I keep telling myself that if there was something wrong, i would have heard back by now, unless they are trying to reach a specialist or get me in with the hematologist. Or, everything is just fine and there is nothing wrong...?
'
Here is another question: I have weird purple spots (rash?) that appear from time to time, one at a time, and eventually disappears. It can be the size of a small pea or smaller. It is dark purple and takes weeks to disappear. And eventually, I get another one on a different spot, but always in my forearms. I finally took pictures so I could show my dr and she was baffled and had never seen that before. So she reffered me to a hematology. Has anyone with multiple myeloma had these?
Anyhow, it's a waiting game right now.
'
Any feedback is appreciated.
'
Re: Are free light chain tests only for multiple myeloma?
Hi Menso,
If you have an elevated serum protein level and purple spots on your skin (which may be "purpura"), your doctor should be ruling out a specific plasma cell disorder called amyloidosis. With amyloidosis, these purple spots usually appear around the eyes, but they can show up elsewhere.
But be clear there are also other conditions that can cause purpura, so don't necessarily assume it's amyloidosis. I'm just mentioning this as something that your doc may want to rule out, especially if your tests show you have monoclonal protein in your blood and/or if your free light chain numbers are out of whack.
If you have an elevated serum protein level and purple spots on your skin (which may be "purpura"), your doctor should be ruling out a specific plasma cell disorder called amyloidosis. With amyloidosis, these purple spots usually appear around the eyes, but they can show up elsewhere.
But be clear there are also other conditions that can cause purpura, so don't necessarily assume it's amyloidosis. I'm just mentioning this as something that your doc may want to rule out, especially if your tests show you have monoclonal protein in your blood and/or if your free light chain numbers are out of whack.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Are free light chain tests only for multiple myeloma?
Menso, have you received a date for your hematologist appointment yet?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Are free light chain tests only for multiple myeloma?
Something is bothering me a bit here Menso, you said that when you go to your family doctor, you don't get to see him or her, just the resident...
Whenever I go to my family doctor, I see my family doctor; if there happens to be resident training in the room, my doctor is still present.
Now my dad's neurosurgeon and myeloma specialist are both associate professors; when my dad first gets to the appointment, he meets with the training resident about any quality of life or pain issues; the resident and my dad both then meet with the specialist all together (with my dad's permission for the resident to be present)
Same goes with my dad's hemotologist, the resident meets with him first, then all sit together for discussion.
Whenever I go to my family doctor, I see my family doctor; if there happens to be resident training in the room, my doctor is still present.
Now my dad's neurosurgeon and myeloma specialist are both associate professors; when my dad first gets to the appointment, he meets with the training resident about any quality of life or pain issues; the resident and my dad both then meet with the specialist all together (with my dad's permission for the resident to be present)
Same goes with my dad's hemotologist, the resident meets with him first, then all sit together for discussion.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Are free light chain tests only for multiple myeloma?
Welcome to the forum. I have both AL amyloidosis and multiple myeloma. I agree that you should be tested specifically for amyloidosis. Any biopsies that you have done should be submitted for "Congo Red Stain", which isn't necessarily always done routinely.
The waiting is horrible. Truly horrible. I think that's the worst part. When I was at your stage, I had the whole "fight or flight" response the entire time, which is exhausting. It seems to get better for most people, so hang in there!
The waiting is horrible. Truly horrible. I think that's the worst part. When I was at your stage, I had the whole "fight or flight" response the entire time, which is exhausting. It seems to get better for most people, so hang in there!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
8 posts
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