Does anyone else have MGUS?

I am an active 75 year old and I was diagnosed with anemia, than MGUS 6 months later and 18 months after, with Waldenstrom Macrooglobulinema (WH), a non-hodgkins lymphoma. My lab results are all over the place, high and low, but after bone marrow biopsy symptoms were definitive enough for diagnosis. I am on the watch and wait program with repeat of labs every 3 months. Mo treatment yet,

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@shannyd Welcome to Mayo Clinic Connect! It's very easy to get concerned when seeing results we weren't expecting. I agree with @loribmt to not go down the rabbit hole of Dr. Google. That's downright scary and can bring unwanted anxiety!

Here, sit with me at the table, a cuppa tea and a few cookies are set up for you. Let's talk about your fears and concerns. Take some time to write out what is most concerning. Come Tuesday, you'll be ready to calmly listen, and ask any questions.
Ginger

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I was referred to a hematology oncologist after I had routine bloodwork last September. The only thing I was told about my tests was that I shouldn’t expect perfect bloodwork at age 74, and to come back for more bloodwork in a year. It wasn’t until I looked on mychart that I learned I have monoclonal paraproteinemia. I googled it, and MGUS popped up. I’ve read that there are no symptoms with MGUS, but I often feel extremely tired. I’m also fighting frequent sinus issues, and feel headachy and just blah. Is this normal?? Should I be concerned?

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@trishagirl70 Perhaps an appointment with your primary care doctor to run the "usual" bloodwork, and rule out infections, anemia, etc is in order? I know that the labs where my bloodwork is done, takes into consideration my age/gender/fasting or not.

If you haven't gone to the website for International Myeloma Foundation, yet, take a look there and it will discuss MGUS. The paraproteinuria is simply a definition of an abnormal protein being present. myeloma.org
Ginger

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Thanks. I just had bloodwork via my primary, and everything was in normal range, so there’s no explanation for my tiredness. I just saw MGUS and was concerned. I appreciate your reply.

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Hello again. I have my first consultation with a hematologist coming up on Wed and I'm excited ... and nervous that I'll be brushed off again. For over a decade, I've had numbness in my septum, roof of my mouth and tongue. It's a curious case when 100% numbness may come in any of these areas for a short period of time, but a loss of sensation is present all of the time in my tongue. I saw a neurologist about this back then and he couldn't determine the cause (because it's symmetrical, smack dab in the center). I even had a spinal tap done to rule out MS. What's interesting is the spinal showed high IGG in my blood (>2000 mg/dL) and low albumin in my CSF (7.0 mg/dL). I wish I had been sent to a hematologist then. Instead, I was diagnosed with migraines (which I'm beginning to think is the neurological catch-all) and sent on my way.

Last year, an observant PCP noticed my slightly low HGb, which is how I landed here today. But the more I read, the more I think that my neurological issues (which are getting worse by the way) are tied to MGUS. Unfortunately, everything I read is focused on hands, feet, gait and not really any other areas. I want to discuss this with the hematologist on Wed, but I fear I will be dismissed, much like my PCP who stated "sometimes we just don't know".

Am I off my rocker? I plan to bring up the results from 10 years ago combined with today and hope that he'll also see a connection. But if he doesn't, do I let it go? Hard to let go when I think it sometimes impacts my swallowing. Did I mention that the numbness is extending to my throat? It's hard not to think that the function of my throat isn't impacted, that it won't cause more significant issues down the road, like eating, drinking and breathing. You know, minor things that keep you alive.

Uh ... not panicking,
mikxtr

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Hello again. I have my first consultation with a hematologist coming up on Wed and I'm excited ... and nervous that I'll be brushed off again. For over a decade, I've had numbness in my septum, roof of my mouth and tongue. It's a curious case when 100% numbness may come in any of these areas for a short period of time, but a loss of sensation is present all of the time in my tongue. I saw a neurologist about this back then and he couldn't determine the cause (because it's symmetrical, smack dab in the center). I even had a spinal tap done to rule out MS. What's interesting is the spinal showed high IGG in my blood (>2000 mg/dL) and low albumin in my CSF (7.0 mg/dL). I wish I had been sent to a hematologist then. Instead, I was diagnosed with migraines (which I'm beginning to think is the neurological catch-all) and sent on my way.

Last year, an observant PCP noticed my slightly low HGb, which is how I landed here today. But the more I read, the more I think that my neurological issues (which are getting worse by the way) are tied to MGUS. Unfortunately, everything I read is focused on hands, feet, gait and not really any other areas. I want to discuss this with the hematologist on Wed, but I fear I will be dismissed, much like my PCP who stated "sometimes we just don't know".

Am I off my rocker? I plan to bring up the results from 10 years ago combined with today and hope that he'll also see a connection. But if he doesn't, do I let it go? Hard to let go when I think it sometimes impacts my swallowing. Did I mention that the numbness is extending to my throat? It's hard not to think that the function of my throat isn't impacted, that it won't cause more significant issues down the road, like eating, drinking and breathing. You know, minor things that keep you alive.

Uh ... not panicking,
mikxtr

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@mikxtr I will be interested to hear about your appointment, what you think of this new doctor and all afterwards! May I suggest, if you haven't already, is to have a timeline written out of your symptoms, how it is affecting you, how to address it. Have one copy for you, one for the doctor. Let this person know you want to be part of the solution to your concerns, and want to be engaged, proactive, and ready to listen to what they have to say. I truly hope this will make a difference in how you are seen as a patient.
Ginger

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Hello again. I have my first consultation with a hematologist coming up on Wed and I'm excited ... and nervous that I'll be brushed off again. For over a decade, I've had numbness in my septum, roof of my mouth and tongue. It's a curious case when 100% numbness may come in any of these areas for a short period of time, but a loss of sensation is present all of the time in my tongue. I saw a neurologist about this back then and he couldn't determine the cause (because it's symmetrical, smack dab in the center). I even had a spinal tap done to rule out MS. What's interesting is the spinal showed high IGG in my blood (>2000 mg/dL) and low albumin in my CSF (7.0 mg/dL). I wish I had been sent to a hematologist then. Instead, I was diagnosed with migraines (which I'm beginning to think is the neurological catch-all) and sent on my way.

Last year, an observant PCP noticed my slightly low HGb, which is how I landed here today. But the more I read, the more I think that my neurological issues (which are getting worse by the way) are tied to MGUS. Unfortunately, everything I read is focused on hands, feet, gait and not really any other areas. I want to discuss this with the hematologist on Wed, but I fear I will be dismissed, much like my PCP who stated "sometimes we just don't know".

Am I off my rocker? I plan to bring up the results from 10 years ago combined with today and hope that he'll also see a connection. But if he doesn't, do I let it go? Hard to let go when I think it sometimes impacts my swallowing. Did I mention that the numbness is extending to my throat? It's hard not to think that the function of my throat isn't impacted, that it won't cause more significant issues down the road, like eating, drinking and breathing. You know, minor things that keep you alive.

Uh ... not panicking,
mikxtr

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