Well a skeletal x-ray series, ct chest, and MRI of lumbar spine and right hip later I am more frustrated. Saw my local heme/oncologist today who started by saying "Well we found nothing wrong." To which I replied great now what do I do? He said well he need not see me again for at least 6 months. To which I replied So, you aren't going to do the BMB? He says no there is not an indication. So we get into another heated discussion about monoclonal proteins and beta regions and him not following the MGUS/SMM diagnosing criteria.
I am sure you all can see where this is going. I promised my husband I would be good at this appointment and just say thanks and we would go get a second opinion but couldn't just do that. When I just couldn't take it anymore I told him I absolutely knew something is wrong with me, I am not attention seeking, would love nothing more than it to NOT be any of this and I am not a drug seeker. Wow did he look stunned! Like a deer in the headlights.
I originally sought care because of unbearable fatigue and bone pain. When all my rheumatology labs came back ok and I had a monoclonal protein elevation in the beta region I was sent to him. I have had to fight every step of the way for them to take this seriously and really investigate it.
My m-spike is 0.90 and is IgA lambda paraprotein. Low but still there. Very low vitamin d at 13 with a Ca of 9.5. My albumin is on low side of normal at 3.52 and I am not anemic. All my scans and x-rays are negative. My UPEP was negative except for alpha 1 and 2 and beta microalbuminemia.
No idea about plasma % because he said no BMP until I got upset today and he said well if 1 or more of 3 things are elevated out of sed rate, crp and b2m and my crp came back at 7.0.
Still have debilitating fatigue and severe bone pain. Told this couldn't be MGUS because it is asymptomatic. Also can't be SMM or multiple myeloma because no CRAB and lab values low.
Sorry about the long post but I just needed to vent and whine!! Argh!
Angie
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
Re: Frustrated!
Sound like your doctor is following protocol. "Watch and wait". My oncologist did that for a year. When my numbers when up he did a BMB.
You may be MGUS at this stage.
Even with where my numbers are I'm SMM and there's no treatment at this stage. I have no lesions, anemia or any other symptoms. I'm perfectly happy if I remain where I am and need no treatment.
Be happy there's no treatment and go to a Myeloma Specialist for a second opinion.
You may be MGUS at this stage.
Even with where my numbers are I'm SMM and there's no treatment at this stage. I have no lesions, anemia or any other symptoms. I'm perfectly happy if I remain where I am and need no treatment.
Be happy there's no treatment and go to a Myeloma Specialist for a second opinion.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Frustrated!
Hi Angie - I agree with Stan. Your dr is watching and will recheck within 6 months. I had my first ever m spike in Oct 2011 of 1.0. All my tests (24 hr urine, x-rays, etc.) were neg except a month later my m spike was 1.5. I had the BMA and it was negative for SM or multiple myeloma. My dr said I am typical of Ig G MGUS because I'm symptom free. Just had the 6 month blood check and no change in m spike.
Since diagnosed with MGUS, I've learned from various websites that many with MGUS have an autoimmune diagnosis too. In fact, when hiking I met another woman and we realized we both see the same endo dr for low thryoid and she has MGUS. Sometimes, I wish my endo had never ran the 'expanded blood panel' for a Vitamin D assessment because that is how they found the m spike. I think of all the stress that M spike has caused!
Could having a low Vit D status cause bone pain? I assume being tired could be assoc with anemia, but you indicated you are not anemic. If not satisifed, you can always get a second opinion. Diane
Since diagnosed with MGUS, I've learned from various websites that many with MGUS have an autoimmune diagnosis too. In fact, when hiking I met another woman and we realized we both see the same endo dr for low thryoid and she has MGUS. Sometimes, I wish my endo had never ran the 'expanded blood panel' for a Vitamin D assessment because that is how they found the m spike. I think of all the stress that M spike has caused!
Could having a low Vit D status cause bone pain? I assume being tired could be assoc with anemia, but you indicated you are not anemic. If not satisifed, you can always get a second opinion. Diane
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Dianem
Re: Frustrated!
Thank you both for the encouragement. Sorry that was so whiny! I was tired and frustrated.
Quick overview is : dxd lupus 1999 and on Prednisone 20mg or more every day >10 years
6 months ago decided I was sick and tired of steroids and they are not good for me and with primary docs help started weaning off very slowly (1mg per month) and also began trying to eat healthier and move around more
About 3 months after starting all of that I started feeling much worse instead of better with the bone pain and fatigue so asked primary for referral to new rheumy in town ( was going out of town about 3 hrs away because we didn't have one)
Beginning of June saw new rheumy who ordered lab work (no surprise)
June 28 follow up with rheumy who said all lupus blood work negative (also no surprise; been down that road before) but I had this thing called monoclonal protein and I needed to see Hematologist
Long story short saw hematologist who ordered more blood and urine labs including 24 hr urine
IgG=575
IgA=838
igM=57
Vitamin D is 13. Calcium 9.5
Urine only showed alpha 1 and 2 and beta micro globulins present
Immunofixation was IgA lambda para protein with m-spike of 0.90
Skeletal X-ray,CT chest and MRI lumbar spine and right hip all normal
I was absolutely fine until the heme/onco doc walked and said well all normal nothing wrong and made me feel like I was crazy; the week before he had said that if all scans and x-rays come back normal he was STILL going to do BMB to make sure it wasn't anything more serious
At this point he could tell I was upset and I began to tell him how hard it is to function and I want/need to get my old self back
He said well ok if your CRP or sed rate or b2m come back abnormal (any of the 3) we will do the BMB; I think he was just telling me this to appease me and fully expected them to be fine
That evening I received a call from him personally saying my CRP was high and it shouldn't be there at all because I am on steroids so we need to schedule the BMP as soon as we can
No I don't want this to be MGUS,SM or multiple myeloma or anything else BUT I know there IS something wrong and I am having a hard time getting these doctors to believe that as a result of my chronic steroid use my labs might not present typically and they may need to look at the whole picture and treat the patient and not just the labs and x-rays
As an aside I had my BMB yesterday at which time he told me my sed rate is now "real high" . 1 month ago it was 9.
If it isn't something he needs to treat GREAT! But I need to be sure before I move on to another ologist. The rheumy has pretty much written me off saying it isn't rheumatological. So now where do I go?
Well I have managed to be whiny and pitiful again. Sorry. Maybe I will know more in a few days when the BMB results start coming back.
Thanks for listening!
Angie
Quick overview is : dxd lupus 1999 and on Prednisone 20mg or more every day >10 years
6 months ago decided I was sick and tired of steroids and they are not good for me and with primary docs help started weaning off very slowly (1mg per month) and also began trying to eat healthier and move around more
About 3 months after starting all of that I started feeling much worse instead of better with the bone pain and fatigue so asked primary for referral to new rheumy in town ( was going out of town about 3 hrs away because we didn't have one)
Beginning of June saw new rheumy who ordered lab work (no surprise)
June 28 follow up with rheumy who said all lupus blood work negative (also no surprise; been down that road before) but I had this thing called monoclonal protein and I needed to see Hematologist
Long story short saw hematologist who ordered more blood and urine labs including 24 hr urine
IgG=575
IgA=838
igM=57
Vitamin D is 13. Calcium 9.5
Urine only showed alpha 1 and 2 and beta micro globulins present
Immunofixation was IgA lambda para protein with m-spike of 0.90
Skeletal X-ray,CT chest and MRI lumbar spine and right hip all normal
I was absolutely fine until the heme/onco doc walked and said well all normal nothing wrong and made me feel like I was crazy; the week before he had said that if all scans and x-rays come back normal he was STILL going to do BMB to make sure it wasn't anything more serious
At this point he could tell I was upset and I began to tell him how hard it is to function and I want/need to get my old self back
He said well ok if your CRP or sed rate or b2m come back abnormal (any of the 3) we will do the BMB; I think he was just telling me this to appease me and fully expected them to be fine
That evening I received a call from him personally saying my CRP was high and it shouldn't be there at all because I am on steroids so we need to schedule the BMP as soon as we can
No I don't want this to be MGUS,SM or multiple myeloma or anything else BUT I know there IS something wrong and I am having a hard time getting these doctors to believe that as a result of my chronic steroid use my labs might not present typically and they may need to look at the whole picture and treat the patient and not just the labs and x-rays
As an aside I had my BMB yesterday at which time he told me my sed rate is now "real high" . 1 month ago it was 9.
If it isn't something he needs to treat GREAT! But I need to be sure before I move on to another ologist. The rheumy has pretty much written me off saying it isn't rheumatological. So now where do I go?
Well I have managed to be whiny and pitiful again. Sorry. Maybe I will know more in a few days when the BMB results start coming back.
Thanks for listening!
Angie
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
Re: Frustrated!
This is just my opinion:
You should see an oncologist/hematologist. Then, a Myeloma specialist if necessary.
You should see an oncologist/hematologist. Then, a Myeloma specialist if necessary.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Frustrated!
Hi Angie,
No need to feel bad about whining... I am a mguser and have been down the same road as you.
I think sometimes they just can't explain our symptoms, related or not to the mgus. I have a boat load of symptoms. My crp is really high as well and I too was told to see a rheumy. There is a connection to several benign conditions as well as malignant was as well. I suppose as long as most of your labs are stable we can stay in the mgus category for the rest of our lives. Hope that helps. Been a mguser for over 6 years and holding!
No need to feel bad about whining... I am a mguser and have been down the same road as you.
I think sometimes they just can't explain our symptoms, related or not to the mgus. I have a boat load of symptoms. My crp is really high as well and I too was told to see a rheumy. There is a connection to several benign conditions as well as malignant was as well. I suppose as long as most of your labs are stable we can stay in the mgus category for the rest of our lives. Hope that helps. Been a mguser for over 6 years and holding!
Re: Frustrated!
Stan and Majolika,
Thanks for the encouragement. In case you can't tell patience is not one of my virtues but I am learning.
I am actually pretty happy saying that this is not the culprit and I don't really need to worry too much now that the BMB has been done and knock on wood the % plasma is low enough to be called MGUS.
My husband, mother-in-law, and parents are not. They would much prefer I seek a second opinion with a myeloma specialist.
Haven't decided yet. I do feel as if my heme/oncologist is taking me a little more seriously now and we have agreed to disagree at times.
Thanks again for your input. It is nice to bend an ear of someone who has/is been there.
Angie
Thanks for the encouragement. In case you can't tell patience is not one of my virtues but I am learning.
I am actually pretty happy saying that this is not the culprit and I don't really need to worry too much now that the BMB has been done and knock on wood the % plasma is low enough to be called MGUS.
My husband, mother-in-law, and parents are not. They would much prefer I seek a second opinion with a myeloma specialist.
Haven't decided yet. I do feel as if my heme/oncologist is taking me a little more seriously now and we have agreed to disagree at times.
Thanks again for your input. It is nice to bend an ear of someone who has/is been there.
Angie
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
Re: Frustrated!
Meant to say YEAH on the six years and holding!!!!
Gives great hope!
Angie
Gives great hope!
Angie
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
8 posts
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