Hi, everyone!
I found this site early September looking to see what M-protein and monoclonal gammopathy means, at the same time going through many blood tests. My name is Dana, live in Missouri, I’m 45 years old and I’m falling apart slowly.
In 2013 I had surgery to fuse my C5-6 and slowly all the pain left and I was able to get back to exercising and feeling really good. Until the day I started running. It had been one year from surgery and I needed to start running for my job – had to take a PT test. Started noticing my feet tingling and going numb, my left then my right, my neck started hurting again, both arms started going numb again, my calves hurting for no reason, the front of my neck on the right side would hurt and move to in front of my throat, blurred vision, my focus was gone, sometimes putting a sentence together was tricky, words were hard to find. All symptoms would come and go.
So about May 2014, I had all the symptoms above plus starting to always be tired, fatigue, I couldn’t keep my eyes open, I could sleep 12 hours straight and wake up and want to go back to bed because I was so tired. I got the flu in February and May, like with fever, I never get sick and miss work, but I was done for. My doctor did every test under the sun that he could think about, referred me to an orthopedic specialist doctor because of my surgery, thinking we would start there.
Before I saw the orthopedic, we did MRIs of neck, head, and lower back. He was checking for MS. Went to the orthopedic and he said everything was fine, but referred me to neurologist just for nerve testing on left side. Of course I passed that test, so the ortho said I was fine. I was like no I’m not. He referred me to a rheumatologist.
On 26 August did all kinds of blood test and on 2 September found out my M- protein was 0.71 g/dL and iron was low. She put me on iron pills, referred me to a hematologist / oncologist. Just to let you know my background, my mom died at age 62 of leukemia, stage 4 acute. She lived a year after finding out. My sister fought a hard fight, stage 4 ovarian cancer, died after 4 years at age 52. My dad is alive but had prostate cancer at age 55. My mother’s side of the family has had breast cancer to melanoma.
On September 29th 2014 I was told I might have MGUS. We did every blood test under the sun, urine for 24 hours, and bone marrow biopsy. With all that said, he said MGUS does not have symptoms, but that I needed test again in December:
Kappa Free 7.78 Range 3.30 – 19.40
Lambda Free 7.05 Range 5.710 - 26.30
Ratio 1.10 Range 0.26 - 16.50
IgA 100 Range 68 - 378
IgG 1250 Range 694 - 1618
IgM 108 Range 60 - 263
June 29th 2015 numbers:
Kappa Free 8.69 Range 3.30 – 19.40
Lambda Free 6.94 Range 5.710 - 26.30
Ratio 1.25 Range 0.26 - 16.50
IgA 97 Range 68 - 378
IgG 1360 Range 694 - 1618
IgM 89 Range 60 - 263
M Protein is 0.71 g/dL, which is down from 0.73 g/dL.
He asked me if I’m still having problems with everything and of course I said yes. He asked if I had tried to take a sleeping pill so I can sleep, that maybe all the fatigue is causing everything. I did a sleep study and nothing of course. So my rheumatologist referred me a neurologist in December 2014 and in January 2015 I was told I have small fiber neuropathy.
Also, she had me do a swallow test, which is fine, but I’m hoarse all the time. So I have fatigue, weakness in the legs and arms, numbness and tingling, dizziness, vertigo, brain fog, speech problems, headaches more often, dry skin, hot all the time, neck hurting, right side and in from of thyroid. When I sleep, my Fitbit is telling me I sleep 2 to 3 hours a night and I’m restless the rest.
Tired of all of this, I did talk them into doing a TSH, T3 Free, and T4 Free. My T3 Free is low. The meds I’m on is meloxicam (Mobic) for pain in lower back and hips, duloxetine (Cymbalta) 60 mg for pain in my legs, and now Mirapex (pramipexole) 0.25 mg for restless legs. Not working; still not getting enough sleep.
Could all this be from MGUS that my doctor doesn’t believe has symptoms?
Forums
Re: MGUS with lots of symptoms - is that normal?
Short answer is yes. Although MGUS is supposed to have NO SYMPTOMS ,there are many of us in pain 24/7 and who have numerous issues.
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Vetpref
Re: MGUS with lots of symptoms - is that normal?
After a successfully resected ependymoma, L2-3, in 1999, I was admitted to an ICU with sepsis. The attending told me I had "multiple myeloma". It turned out he was wrong, but it was quite a scare. Followed up with EP urine and marrow biopsy.
I was diagnosed with MGUS and have seen several oncologists since that time. I too am told without exception that the condition is without symptoms, but have periodic episodes of extreme fatigue, numbness, mental fog. Generally, and lately, these occur in conjunction with stage 3 kidney disease, due to lowered GFR: <55. Creatinine is ok, So it shouldn't be sluffing protein. Calcium ok.
My current oncologist is a pistol. We chat (my early studies included cytology, immunology, and pathology), and she too is not concerned with symptoms being a part of the MGUS diagnosis.
Until I read the above post, I haven't spent a moment thinking about any linkage.
I was diagnosed with MGUS and have seen several oncologists since that time. I too am told without exception that the condition is without symptoms, but have periodic episodes of extreme fatigue, numbness, mental fog. Generally, and lately, these occur in conjunction with stage 3 kidney disease, due to lowered GFR: <55. Creatinine is ok, So it shouldn't be sluffing protein. Calcium ok.
My current oncologist is a pistol. We chat (my early studies included cytology, immunology, and pathology), and she too is not concerned with symptoms being a part of the MGUS diagnosis.
Until I read the above post, I haven't spent a moment thinking about any linkage.
Re: MGUS with lots of symptoms - is that normal?
I have the same experiences. The physicians are understandably concerned about the devastating effects of myeloma. With all things being relative, those of us with only an MGUS diagnosis are blessed. I'm sure the docs are aware of the relatively minor problems caused by MGUS in contrast to the horrific potential of an untreatable case of multiple myeloma. First of all, good doctors do not want to unnecessarily worry a patient. Secondly, they know that the odds of MGUS transitioning to myeloma prior to an otherwise normal death are slight.
However, you are young, have a family history of importance and are exhibiting some signs and symptoms that are of significance. Since you are from Missouri, I strongly suggest you get an appointment at Siteman Cancer Center in St. Louis (Barnes-Jewish Hospital and Washington University Physicians). Furthermore, I recommend that, in addition to St. Louis, you register for a battery of tests at the University of Arkansas for Medical Sciences (UAMS - Little Rock). The Myeloma Institute for Research and Therapy (MIRT) is at UAMS and ranked among the best such institutions in the world.
The medical advances made in the study and treatment of myeloma and related cancers are astounding. Take care!
However, you are young, have a family history of importance and are exhibiting some signs and symptoms that are of significance. Since you are from Missouri, I strongly suggest you get an appointment at Siteman Cancer Center in St. Louis (Barnes-Jewish Hospital and Washington University Physicians). Furthermore, I recommend that, in addition to St. Louis, you register for a battery of tests at the University of Arkansas for Medical Sciences (UAMS - Little Rock). The Myeloma Institute for Research and Therapy (MIRT) is at UAMS and ranked among the best such institutions in the world.
The medical advances made in the study and treatment of myeloma and related cancers are astounding. Take care!
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bennett
Re: MGUS with lots of symptoms - is that normal?
Everyone keeps saying I need a second opinion, but I don't think I have received my first one. All my doctors are still trying to figure it out.
Thyroid specialist add a pill yesterday, Cytomel (liothyronine sodium) 5 mg. We will see if this helps.
I would love to go to St. Louis or Arkansas and see a specialist and or let them run every test under the sun, which I think I have had. I have two more appointments this month. If I don't get anywhere, I will have to ask for my second opinion at Siteman Cancer Center in St. Louis (Barnes-Jewish Hospital) or at UAMS. I wonder what Tricare will say to me?
Thyroid specialist add a pill yesterday, Cytomel (liothyronine sodium) 5 mg. We will see if this helps.
I would love to go to St. Louis or Arkansas and see a specialist and or let them run every test under the sun, which I think I have had. I have two more appointments this month. If I don't get anywhere, I will have to ask for my second opinion at Siteman Cancer Center in St. Louis (Barnes-Jewish Hospital) or at UAMS. I wonder what Tricare will say to me?
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danasquires
Re: MGUS with lots of symptoms - is that normal?
Have they considered the possibility of amyloidosis? It arises from the same plasma cell condition that causes MGUS. It can affect different body organs and so is hard to pin down based on symptoms, but can affect the nerves.
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: MGUS with lots of symptoms - is that normal?
None of my doctors has even mentioned amyloidosis, but I have been thinking about it and POEMS, because of this :
I just hope we get this figured out soon!
- Polyneuropathy. Numbness, tingling and weakness in your legs — and over time, maybe in your hands — and difficulty breathing. I have all of this!
- Organomegaly. Enlarged spleen, liver or lymph nodes - I have no idea and or how to find out!
- Endocrinopathy. Abnormal hormone levels that can result in underactive thyroid (hypothyroidism), diabetes, sexual problems, fatigue, swelling in your limbs, and problems with metabolism and other essential functions. - my T3 is low and we will see about everything else soon!
- Monoclonal plasma-proliferative disorder. Abnormal bone marrow cells (plasma cells) that produce a protein (monoclonal protein) that can be found in the bloodstream. - Have MGUS
- Skin changes. Multiple dermatologic changes have been associated with POEMS syndrome. The most common changes include hyperpigmentation, skin thickening, sclerodermoid changes, and hypertrichosis. Other skin changes, including whitening of the proximal nail (Terry nails), peripheral edema, hyperhidrosis, clubbing of the fingers, Raynaud phenomenon, and angiomas, have been observed, which last March I noticed all kinds of Angiomas on my legs and arms, very dry skin.
I just hope we get this figured out soon!
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danasquires
Re: MGUS with lots of symptoms - is that normal?
Hi Dana,
I am 37 and I was diagnosed with MGUS IgA kappa a few month ago after trying to figure our why I had constant debilitating headaches. I have many symptoms: headache, dizziness, muscle twitching, numbness. All medical tests found nothing except MGUS.
Christophe
I am 37 and I was diagnosed with MGUS IgA kappa a few month ago after trying to figure our why I had constant debilitating headaches. I have many symptoms: headache, dizziness, muscle twitching, numbness. All medical tests found nothing except MGUS.
Christophe
Re: MGUS with lots of symptoms - is that normal?
Christophe,
Does your doctor believe that MGUS causes symptoms? That is my problem at this time, beecause I think my doctor is think ing my other doctors will find the other problems. You say MGUS IgA, I thought MGUS is all the same, I don't remember him telling me that. What is the difference is one better then the other?
Does your doctor believe that MGUS causes symptoms? That is my problem at this time, beecause I think my doctor is think ing my other doctors will find the other problems. You say MGUS IgA, I thought MGUS is all the same, I don't remember him telling me that. What is the difference is one better then the other?
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danasquires
Re: MGUS with lots of symptoms - is that normal?
I have just been diagnosed with MGUS, and I also have weakness in my legs and fatigue that comes and goes. Many stomach issues, inflammation that causes pain too, yet my oncologist says these are caused by another issue. Or multiple issues. And since in all the recent tests I've taken, I also was positive for autoimmune (they think lupus), they're thinking it is from this. But they still can't completely figure out why my kidneys are not dumping protein. Another issue. They did a kidney biopsy, which came back with inflammation of the filter lining the kidney, but no major or conclusive issues.
I'm stumped. And testing has been very aggressive since March 2015. This is how they found the high kappa light chains, and positive ANA, and protein in the urine. I've had CAT scans (2), and several X-rays, one a full skeletal. At one point, I couldn't walk from pain in left hip that radiated down my leg and into my foot. My pain jumps around my body. They are not concerned with the pain, just the lab work.
I'm stumped. And testing has been very aggressive since March 2015. This is how they found the high kappa light chains, and positive ANA, and protein in the urine. I've had CAT scans (2), and several X-rays, one a full skeletal. At one point, I couldn't walk from pain in left hip that radiated down my leg and into my foot. My pain jumps around my body. They are not concerned with the pain, just the lab work.
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Suesan
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