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New test results, leading us in a different direction
Hi all, I understand I don't come here often anymore and many of the newer folks won't recognize me or be familiar with my situation. But I wanted to pop in and let anyone know who might have been following this unfolding mystery that we have some test results that could explain what's happening and they point directly away from MS.
A few months back I had to go to the ER for the diaphragm spasms, which led to a consult with a GI, which led to blood tests for a followup that showed a low globulin level. The GI didn't dig in further, but upon revisiting with my GP and asking him about this, he did dig in further and ran a serum protein electrophoresis. The gammas came back low, showing my immune system isn't making enough antibodies. He ordered another blood test called immunofixation to see which antibodies are low, and mentioned referring me back to the infectious disease specialist depending on how this test comes back.
Considering the fact I was fighting a viral infection at the time of the blood draw, this is especially significant because the antibodies should have been high.
I'm not sure what it all means yet, but we're finally moving away from non-specific and non-diagnostic to potentially finding some concrete answers. One of my concerns is the possibility of multiple myeloma, and it has been mentioned before because of some other oddities that cropped up along the way. I suspect my doc has been wanting to test for this for quite some time and often asks me about bone pain. He finally found something to lead us toward ruling this out if nothing else.
Anyway, I hope everyone is doing well and enjoying the cooler weather. It sure did change fast, and as has been the pattern all year, it's a month early. We're supposed to get frost tonight, a month early.
A few months back I had to go to the ER for the diaphragm spasms, which led to a consult with a GI, which led to blood tests for a followup that showed a low globulin level. The GI didn't dig in further, but upon revisiting with my GP and asking him about this, he did dig in further and ran a serum protein electrophoresis. The gammas came back low, showing my immune system isn't making enough antibodies. He ordered another blood test called immunofixation to see which antibodies are low, and mentioned referring me back to the infectious disease specialist depending on how this test comes back.
Considering the fact I was fighting a viral infection at the time of the blood draw, this is especially significant because the antibodies should have been high.
I'm not sure what it all means yet, but we're finally moving away from non-specific and non-diagnostic to potentially finding some concrete answers. One of my concerns is the possibility of multiple myeloma, and it has been mentioned before because of some other oddities that cropped up along the way. I suspect my doc has been wanting to test for this for quite some time and often asks me about bone pain. He finally found something to lead us toward ruling this out if nothing else.
Anyway, I hope everyone is doing well and enjoying the cooler weather. It sure did change fast, and as has been the pattern all year, it's a month early. We're supposed to get frost tonight, a month early.
So the antibody levels came back normal in all classes, although at the low end of their ranges. No further testing has been recommended.
Am I in the clear on this? It sounds like they want to monitor it for awhile. Is this a reasonable path at this stage?
Am I in the clear on this? It sounds like they want to monitor it for awhile. Is this a reasonable path at this stage?
How wonderful. I'm so glad to hear it's going that well. After reading more, I calmed down quite a bit. You're right, there's no sense in worrying about something we don't have the answers to yet. Like I said, I had gotten past that, except during acute exacerbations when no docs could really help me. This just threw other possibilities in the arena that I wasn't mentally prepared to accept. Who wants to go there? lol
If this does lead us to the answers we've been looking for for 2 years, it would be a godsend. It is what it is, and if it is cancer, it's better to know sooner rather than later. I look forward to finding a way to start feeling better.
How many treatments have you had, and how long does it take to recover from them?
My mom has been fighting stage 4 lung cancer for 5 years now. She's slowly losing her battle, but it's nothing short of amazing how many different types of chemo they've thrown at this to give her a longer life. Her prognosis was 6 months to 1 year, but they told her not to believe that because they've made so much progress with cancer treatment. It's absolutely true. Her first set of docs were talking about running out of options after the first 6 months. She found new docs and never looked back.
If this does lead us to the answers we've been looking for for 2 years, it would be a godsend. It is what it is, and if it is cancer, it's better to know sooner rather than later. I look forward to finding a way to start feeling better.
How many treatments have you had, and how long does it take to recover from them?
My mom has been fighting stage 4 lung cancer for 5 years now. She's slowly losing her battle, but it's nothing short of amazing how many different types of chemo they've thrown at this to give her a longer life. Her prognosis was 6 months to 1 year, but they told her not to believe that because they've made so much progress with cancer treatment. It's absolutely true. Her first set of docs were talking about running out of options after the first 6 months. She found new docs and never looked back.
I go to a specialist at a Cancer Hospital, Hematology is most of the second floor, but they run other clinics out of there for more benign blood disorders too, not just cancer! Try not to borrow tomorrow's problems today! Yes it is pretty scary, the first time I went to chemo I was anxiety city, but then it got to be less scary for me as time went on.
I have read recently Multiple Myeloma has had the most break throughs in the last 10 years compared to other cancers, it is now thought to be treatable, compared to the 3-5 years death sentence it was 10 years ago. I'm living with it for almost 3 years now and doing well. My doctor says her job is to give me a long, full life, and I have accepted my life will require periods of treatment, and then hopefully followed by long remissions. I hope you finally get some answers. For me, I was actually relieved that my bloodwork finally showed my mystery diagnosis so at I could get on treatment and feel better. My first round of chemo cut my proteins almost in half, so it was quite a good response!
I have read recently Multiple Myeloma has had the most break throughs in the last 10 years compared to other cancers, it is now thought to be treatable, compared to the 3-5 years death sentence it was 10 years ago. I'm living with it for almost 3 years now and doing well. My doctor says her job is to give me a long, full life, and I have accepted my life will require periods of treatment, and then hopefully followed by long remissions. I hope you finally get some answers. For me, I was actually relieved that my bloodwork finally showed my mystery diagnosis so at I could get on treatment and feel better. My first round of chemo cut my proteins almost in half, so it was quite a good response!
Your symptoms sound a lot like mine, but our blood labs are quite different. I've been referred to a blood specialist. They answered the phone, "Oncology."
Words can't describe what I'm feeling right now. My emotions are all over the board. This is probably quite irrational at this stage of the game. After all, there are other benign conditions that can cause this. I think it's time to up the anxiety meds.
I was so past this part, too. It's making me angry.
Words can't describe what I'm feeling right now. My emotions are all over the board. This is probably quite irrational at this stage of the game. After all, there are other benign conditions that can cause this. I think it's time to up the anxiety meds.
I was so past this part, too. It's making me angry.
I had many neuro symptoms. Turns out I had a rarer syndrome called Hyperviscocity Syndrome from the large amounts of Myeloma Protien in my blood. It thickens blood and then it doesn't reach all the nerves. So my hands, eyes, legs were affected. Also had crushing migraines every week or so. With treatment most went away accept for some of the vision stuff (permanent damage to the nerve). This affects about 5% of MM patients, but is more common with some other blood cancer then MM.
Many of my other symtpoms extreme! fatigure, weakness, unable to climb a flilght of stairs, were because I was very anemic. HG was 8.2 when I was diagnosed. Now I'm low normal most of the time, but recently has been around 11.3 wich is low. And since transplant have som bone marrow sluggishness where my cells are larger (MCV of 105) I may end up with another Myelodisplasic diagnosis if things continue, but this isn't common, but not rare either, and my doctor says the transplant can do this
Ok very technical blood numbers... This is why you need a blood specialist!
CBC bloodwork they do is good for following me since I have the common sings of myeloma anemia and a noticeable spike, so it can be monitored for relapse through blood tests alone, and the odd bone scan. REcently had an dexa scan, and I'm good. I was on bone builder drugs fro two years, but have been given the green light to stop them.
Many of my other symtpoms extreme! fatigure, weakness, unable to climb a flilght of stairs, were because I was very anemic. HG was 8.2 when I was diagnosed. Now I'm low normal most of the time, but recently has been around 11.3 wich is low. And since transplant have som bone marrow sluggishness where my cells are larger (MCV of 105) I may end up with another Myelodisplasic diagnosis if things continue, but this isn't common, but not rare either, and my doctor says the transplant can do this
Ok very technical blood numbers... This is why you need a blood specialist!
CBC bloodwork they do is good for following me since I have the common sings of myeloma anemia and a noticeable spike, so it can be monitored for relapse through blood tests alone, and the odd bone scan. REcently had an dexa scan, and I'm good. I was on bone builder drugs fro two years, but have been given the green light to stop them.
Hi Summrluvr! Good to see you pop in here. How are you doing these days? I'd love to feel better. Whatever this is sure does mess with my life. Some days normal, the rest somewhere inbetween not normal and pure sleep binge. I take it you had a lot of neuro symptoms with yours as well? Did they clear up with treatment?
I'm waiting to hear back on the next step here. I realize that M-proteins not showing up yet doesn't mean they aren't there, and I'm sure they are somewhere, considering how my anion gap has been low for all this time (5 years). This is the first time my globulins and IgGs were low, and lymphocytes were pretty low on another test this summer.
Crab sx, lets see if I can remember them, only one test with low RBCs, one area with bone pain (thought it was arthritis from doing massages too long) that started when my calcium level was high, calcium is now normal. No bone lesions have shown up yet on MRIs for the MS testing, but they could have been missed. No renal failure, but had some malfunctioning during a "flare up" last spring.
I have so many questions to ask about this.
I'm waiting to hear back on the next step here. I realize that M-proteins not showing up yet doesn't mean they aren't there, and I'm sure they are somewhere, considering how my anion gap has been low for all this time (5 years). This is the first time my globulins and IgGs were low, and lymphocytes were pretty low on another test this summer.
Crab sx, lets see if I can remember them, only one test with low RBCs, one area with bone pain (thought it was arthritis from doing massages too long) that started when my calcium level was high, calcium is now normal. No bone lesions have shown up yet on MRIs for the MS testing, but they could have been missed. No renal failure, but had some malfunctioning during a "flare up" last spring.
I have so many questions to ask about this.
funny story, my colonscopy I had an allergic reaction to the "go lytely" prep. (what a stupid name) the doctor said it was the first time she has heard of that, but I have had reactions to fake fruit flavouring in other foods.
woah, I'm late seeing this!
I have multiple myeloma! I went from feeling so so sick when I was diagnosed, a few years ago now to feeling 90% like a normal person since my remission induced by stem cell transplant, so it is not as grim as most websites state.
I say 90 because I am dealing with infections again, had a "cold" since August, and finally went to the dr. and found I had an ear infection and chest infection so am on Antibiotics (again). I had low counts last check up likely from the infection, but if it doesn't come up might be time to worry a bit.
For me the M spike was almost 100 when I was diagnosed so it was a very strong diagnostic. I also had some of the "crab" criteria which are elevated Calcium, Renal involvement, anemia and bone involvement. In my case i had bone lesions and anemia, plus history of night sweats, infections, and some other less common symptoms from the very high protein in my blood
I think you really need to get a referral to someone more experienced with MM or blood disorders. My GP in her practice has only had myself and two other MM patients. So she was shocked with my diagnosis.
about 1/4 of MM patients don't have the M-spike. There is a new test called a Freelight test (sorry not sure of the exact name) that looks for light chains. It is a blood test, and my specialist says it also tends to be more sensitive to subtle changes. It has mostly replaced the 24 hour urine collection they used to run scans on for light chains (which is good because as a female peeing into a windshield washer jug for a day straight is not very fun!)
MRI found a few of my lesions, but ct scans were more diagnostic for me. Part of the diagnosis procedure involves a bone survey series of xrays looking for bone lesions. Also the dexa scan looks for bone thinning, but you have already said you have osteoporosis which is another way MM can affect the bones. That is what causes the high calcium levels. You have noted high calcium. Do you have any other explanation for Osteo?
I'm not surprised your immunofixation came back negative. As my doctor says it, the SPEP is to find the M-spike, the immunofixation is to find out what "flavour" it is.(lol) so if you didn't' have a spike there isn't much to quantify. The result I get now is often "trace"' as in trace proteins detectable and my doctor always tells me it's "too low to measure" (by immunofixation) which is good.
I think the osteo is a bit worrying, and you've had some lrregular proteins, any other of the CRAB symptoms?
There is also a pre-myeloma disorder called MGUS, which shows changes in blood work, but not the CRAB features.
Ok this is getting really long! I hope you find answers, it sounds like you've been though so much! (but I hope you do not have Cancer!)
I have multiple myeloma! I went from feeling so so sick when I was diagnosed, a few years ago now to feeling 90% like a normal person since my remission induced by stem cell transplant, so it is not as grim as most websites state.
I say 90 because I am dealing with infections again, had a "cold" since August, and finally went to the dr. and found I had an ear infection and chest infection so am on Antibiotics (again). I had low counts last check up likely from the infection, but if it doesn't come up might be time to worry a bit.
For me the M spike was almost 100 when I was diagnosed so it was a very strong diagnostic. I also had some of the "crab" criteria which are elevated Calcium, Renal involvement, anemia and bone involvement. In my case i had bone lesions and anemia, plus history of night sweats, infections, and some other less common symptoms from the very high protein in my blood
I think you really need to get a referral to someone more experienced with MM or blood disorders. My GP in her practice has only had myself and two other MM patients. So she was shocked with my diagnosis.
about 1/4 of MM patients don't have the M-spike. There is a new test called a Freelight test (sorry not sure of the exact name) that looks for light chains. It is a blood test, and my specialist says it also tends to be more sensitive to subtle changes. It has mostly replaced the 24 hour urine collection they used to run scans on for light chains (which is good because as a female peeing into a windshield washer jug for a day straight is not very fun!)
MRI found a few of my lesions, but ct scans were more diagnostic for me. Part of the diagnosis procedure involves a bone survey series of xrays looking for bone lesions. Also the dexa scan looks for bone thinning, but you have already said you have osteoporosis which is another way MM can affect the bones. That is what causes the high calcium levels. You have noted high calcium. Do you have any other explanation for Osteo?
I'm not surprised your immunofixation came back negative. As my doctor says it, the SPEP is to find the M-spike, the immunofixation is to find out what "flavour" it is.(lol) so if you didn't' have a spike there isn't much to quantify. The result I get now is often "trace"' as in trace proteins detectable and my doctor always tells me it's "too low to measure" (by immunofixation) which is good.
I think the osteo is a bit worrying, and you've had some lrregular proteins, any other of the CRAB symptoms?
There is also a pre-myeloma disorder called MGUS, which shows changes in blood work, but not the CRAB features.
Ok this is getting really long! I hope you find answers, it sounds like you've been though so much! (but I hope you do not have Cancer!)
The immunofixation came back negative. I know that doesn't get me in the clear completely on this, but it's a step in the right direction. Not sure what happens from this point on - whether I get referred out for further testing or GP orders another screening test.
Shell, thank you for the well wishes. I'm not exactly sure what's next except a visit with the ID. I didn't think my labs could be off from the steroids this far out, but you never know. I did have an episode of hypoglycemia after the colonoscopy procedure, so he requested I stay as active as possible to keep those adrenals working. They might still be affected by it, not responding to stress well.
Kelly, something to be aware of, a single SPEP can't rule out MM because some light chains, or a low level of M-proteins may not show up on it. Immunofixation can catch many of them, but not all. In that instance, they need to do a urinary electrophoresis to be completely sure. And then there are some non-secretory cases of MM that don't have any at all. I've been reading a little bit. ;-)
My blood calcium level is normal now, but seems to be fluctuating down the low end of normal to the high and above, which seems strange. I can't seem to find any answers on whether or not this is normal.
Best wishes on your cancer search. I sure hope it comes up clean.
Kelly, something to be aware of, a single SPEP can't rule out MM because some light chains, or a low level of M-proteins may not show up on it. Immunofixation can catch many of them, but not all. In that instance, they need to do a urinary electrophoresis to be completely sure. And then there are some non-secretory cases of MM that don't have any at all. I've been reading a little bit. ;-)
My blood calcium level is normal now, but seems to be fluctuating down the low end of normal to the high and above, which seems strange. I can't seem to find any answers on whether or not this is normal.
Best wishes on your cancer search. I sure hope it comes up clean.
Hi Jumpin J,
I'm sorry you have to be concerned with this, but very happy you have a doctor following up for you. I do not think there should be concern w/your immune system from last years course of steroids.
Nice of you to pop in and let us know about this turn. What are the next steps? To the old ID doc?
I'm loving the fall weather too.
Wishing you the very best, please do keep us posted because you know we care :)
((((hugs)))
shell
I'm sorry you have to be concerned with this, but very happy you have a doctor following up for you. I do not think there should be concern w/your immune system from last years course of steroids.
Nice of you to pop in and let us know about this turn. What are the next steps? To the old ID doc?
I'm loving the fall weather too.
Wishing you the very best, please do keep us posted because you know we care :)
((((hugs)))
shell
I see what you are saying now, with your clear MRIs.
My blood calcium isn't high, however, I have read with MM, it tends to be high. My lympho counts aren't low, but on probably the low end of normal. And my mean corpuscular HGB & all those type of things are borderline low, which I guess shows a certain type of anemia.
I haven't been on any steroids and I take Copaxone.
One of the things they were looking at for me was multiple myeloma. They ran one test - protein electrophorisis serum, which I guess came back negative for it.
However, I am seeing an oncologist and being worked up for cancer (but not MM).
Good luck,
Kelly
My blood calcium isn't high, however, I have read with MM, it tends to be high. My lympho counts aren't low, but on probably the low end of normal. And my mean corpuscular HGB & all those type of things are borderline low, which I guess shows a certain type of anemia.
I haven't been on any steroids and I take Copaxone.
One of the things they were looking at for me was multiple myeloma. They ran one test - protein electrophorisis serum, which I guess came back negative for it.
However, I am seeing an oncologist and being worked up for cancer (but not MM).
Good luck,
Kelly
There could be both things going on, or something else entirely, but my MRIs come back normal. So far, I've had 2 c-spines, and one brain/one thoracic. They find nothing. Even when I'm having symptoms. There were a couple of oddities on EPs, but nothing definitive. Plus, I've had a couple of blood calcium tests come back high or borderline high. I hope it's not either MM or MS. But there is something happening, and after so many negative tests or non-specific tests, we have a lead.
Kelly, your blood test results sound a lot like mine. Do they have you on DMDs or steroids? It could probably be the cause of this on my labs. I had long course of prednisone last year and my immune system maybe still isn't back to normal? The lympho counts have been low, too. They started showing a low anion gap last spring, but my globulins were fine until showing up low this summer.
Thanks for the input. It helps me keep my head on, thinking of other possibilities, considering we know this test is going to be funky. The main question is whether it will show a paraprotein or not. If not, it might be nothing to worry about, except to be vigilant of infection.
Kelly, your blood test results sound a lot like mine. Do they have you on DMDs or steroids? It could probably be the cause of this on my labs. I had long course of prednisone last year and my immune system maybe still isn't back to normal? The lympho counts have been low, too. They started showing a low anion gap last spring, but my globulins were fine until showing up low this summer.
Thanks for the input. It helps me keep my head on, thinking of other possibilities, considering we know this test is going to be funky. The main question is whether it will show a paraprotein or not. If not, it might be nothing to worry about, except to be vigilant of infection.
Sorry to hear about the new possibility. I hope you get the answers you need soon, and they are able to help you.
(((Hugs,)))
Tammy
(((Hugs,)))
Tammy
I wonder what this next test is going to show? Why does it point away from MS - couldn't you have both things going on?
I also have low globulin levels. My total serum protein is borderline low, yet my albumin is fairly normal, which then points to my globulin levels being low. I think it's a very good idea for you to see an infectious disease doctor. The sooner you figure out this stuff the better.
I hope that you don't have multiple myeloma.
Let us know what you find out.
Sending you good thoughts,
Kelly
I also have low globulin levels. My total serum protein is borderline low, yet my albumin is fairly normal, which then points to my globulin levels being low. I think it's a very good idea for you to see an infectious disease doctor. The sooner you figure out this stuff the better.
I hope that you don't have multiple myeloma.
Let us know what you find out.
Sending you good thoughts,
Kelly
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