Looking for advice: Could this be MGUS, because of low m-spike?

Posted by oliviahutson @oliviahutson, Aug 1, 2023

Hello,
I am hoping someone can help better understand my labs and symptoms.
IgA Kappa with .88 m-spike
IgA 1000
Blood in urine
Low RBC
High number in the Betta region
Lower lumber MRI shows heterogeneous bone marrow noted within the pelvis?? Don’t know if that means anything.
Extreme pain in pelvis, lower back and right ribs
Chronic sinus infections
Dizzy all the time
Extreme fatigue
Night sweats
Shortness of breath
Heart pains (sometimes)
Numbness/tingling in both lower legs and feet
Ringing in ears
Vision issues
Weakness in legs and arms
Weight loss 22 lbs in 6 months

Could this just be MGUS, because of low m-spike??

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@oliviahutson My husband was suffering from the same symptoms except the bzck issues. He visited the ER 6-7 times for 3 months and the doctors could explained what was causing his symptoms because all the tests came up normal except that he suffers from Right heart failure which was being treated. After visiting many specialists to find out the cause of all his health issues we decided to go to Jacksonville Mayo Clinic. His cardiologist diagnosed him with Cardiac Amyloidosis after ordering special tests related to Immunoglobulins/proteins with a special CT scan. His Kappa/Lambda were high and his M protein was just a little high. He is taking Vyndamax for it. The amyloidosis was causing all his symptoms including his Heart failure. Now he needs to go back to Mayo this week to check which type of Amyloidosis he has and depending on the results there might be a possibility of starting chemo to stop the process of proliferation of plasma cells which increase the proteins that cause all these problems. Amyloidosis is a very complicated condition because it attacks any organ including your spine. Ask your physician about this. Hope you get better soon and find solutions. Blessings

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@leslie2121

Honestly, hematology is such a complicated area no one but a specialist can tell you those answers and interpret your lab findings.
It could be MGUS, but the bone pain, weight loss, night sweats & extreme fatigue is a little concerning. Have you met with a myeloma specialist to discuss those?
I know we often get results on the portal before the appointment which can cause a lot of anxiety while we wait.
Let us know what you find out, okay? Leslie

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Thanks you for this. I will ask my doctor of MGUS. I have read the symptoms and all check however, I am no Dr.
Newer Blood diseases are relatively new in study. And advancements I believe will be coming.
I hope all is well. Thanks again. Have a great day.

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@naiviv

@oliviahutson My husband was suffering from the same symptoms except the bzck issues. He visited the ER 6-7 times for 3 months and the doctors could explained what was causing his symptoms because all the tests came up normal except that he suffers from Right heart failure which was being treated. After visiting many specialists to find out the cause of all his health issues we decided to go to Jacksonville Mayo Clinic. His cardiologist diagnosed him with Cardiac Amyloidosis after ordering special tests related to Immunoglobulins/proteins with a special CT scan. His Kappa/Lambda were high and his M protein was just a little high. He is taking Vyndamax for it. The amyloidosis was causing all his symptoms including his Heart failure. Now he needs to go back to Mayo this week to check which type of Amyloidosis he has and depending on the results there might be a possibility of starting chemo to stop the process of proliferation of plasma cells which increase the proteins that cause all these problems. Amyloidosis is a very complicated condition because it attacks any organ including your spine. Ask your physician about this. Hope you get better soon and find solutions. Blessings

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I am so sorry he had to go through all that! I haven’t heard of Amyloidosis. I read up on it. Scary when our bodies just are so symptomatic, labs are showing something is up and we can’t find answers right away.
I also just have had two severe allergic reactions can’t pinpoint from what, where I had to take Benadryl. Almost went to ER on one of them. Throat started to swell. It’s all just so strange.

Thank you for letting me know about your husband. I am praying for him.

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@danielsolutions1

Thanks you for this. I will ask my doctor of MGUS. I have read the symptoms and all check however, I am no Dr.
Newer Blood diseases are relatively new in study. And advancements I believe will be coming.
I hope all is well. Thanks again. Have a great day.

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Thank you so much! 💕

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@danielsolutions1

Thanks you for this. I will ask my doctor of MGUS. I have read the symptoms and all check however, I am no Dr.
Newer Blood diseases are relatively new in study. And advancements I believe will be coming.
I hope all is well. Thanks again. Have a great day.

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I think that is a good plan.
Yes, I’m very hopeful for new & more effective treatments for everyone soon.

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@leslie2121

I think that is a good plan.
Yes, I’m very hopeful for new & more effective treatments for everyone soon.

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Just wondering about intense itchiness along with all the other things? It happens mostly at night where there is a very small bump and then the entire area itches terribly. Usually last for hours or an entire day.

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@oliviahutson

Just wondering about intense itchiness along with all the other things? It happens mostly at night where there is a very small bump and then the entire area itches terribly. Usually last for hours or an entire day.

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Sounds like an allergic reaction. Do antihistamines help?
Any food allergies or new medication you are on? Detergents?
Also, if I am anxious I can get mild itchy hives…

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@leslie2121

Sounds like an allergic reaction. Do antihistamines help?
Any food allergies or new medication you are on? Detergents?
Also, if I am anxious I can get mild itchy hives…

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Nothing new. Never happened until all my other symptoms started to happen. It’s very strange. Thinking it’s all related.
Its happens on my hands and feet.

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@oliviahutson

Nothing new. Never happened until all my other symptoms started to happen. It’s very strange. Thinking it’s all related.
Its happens on my hands and feet.

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Yes- could be related. I’m interested in what you find out!

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@oliviahutson

I am so sorry he had to go through all that! I haven’t heard of Amyloidosis. I read up on it. Scary when our bodies just are so symptomatic, labs are showing something is up and we can’t find answers right away.
I also just have had two severe allergic reactions can’t pinpoint from what, where I had to take Benadryl. Almost went to ER on one of them. Throat started to swell. It’s all just so strange.

Thank you for letting me know about your husband. I am praying for him.

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Prayers for you too🙏🙏 Thank you.

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