Diagnosed with MGUS 16 years ago. Health issues all of the time. Polymyalgia Rheumatica/Giant Cell Arteritis. Age 68, non- smoker, no alcohol. Not obese. Not diabetic. CKD, with MGRS, a new and distinct diagnosis for MGUS/MM. MGRS (Monoclonal Gammopathy of Renal Significance). Just on the edge of having MM. Diagnosed with kidney and bone biopsy. Chemotherapy begins as soon as blood test for cryoglobulin comes back. MGUS can be harmless with no symptoms. For me, it has been a nightmare for 16 years. Can't begin to tell you how many doctors told me I was just "deconditioned", and needed more exercise. Have Anemia of Chronic Disease for at least 10 years. MGUS is not always a simple blood "quirk". MGUS is a serious medical condition and like the doctor states, deserves more preventative attention.
Like me. IgG Kappa discovered in 2018. I had it almost certainly 6 years before. It's progressing very slowly from Kappa 37 mg/l to 84 mg/l today. Diabetes will kill me first, probably
UPDATE: Cryoglobulins at 10%. Diagnosed with MGR as cause of CKD. Last month had stem cell transplant after four months of reduction chemo. In "recovery" from stem cell. Just horrible. .
@@stephenrichards5386 Recovery period would not be so bad, except I had a dumb accident first night home from hospital. I got out of bed confused and disoriented (first night home in 3 weeks). I tripped on a chair in the bedroom, fell, and broke my nose. I am having a lot of discomfort from my own shortsightedness. I should have awakened hubby to help me.
UPDATE: Bone biopsy in September showed zero cancer cells, so all good. Back on maintenance chemo. wiped out immune system Started IVIG transfusions for immunity. Please folks, if you have MGUS, do not discount it as a harmless anomaly. Keep an eye on it, especially anemia and kidney issues. The two red flags that helped me get diagnosed. I had MGUS for over 20 years.
I suppose it'd help if I understood what the big names meant, but one thing that listening to all this has done for me, is increase in me a trust that most doctors really *do want us well! I'm waiting on my myeloma scan result and thought I'd check out things related, whilst waiting.
If you want to understand all of the complicated terms we have a course on the basics of myeloma that will help you to get a better grasp. healthtree.org/myeloma/university/courses
I have MGUS, I’m excited that they are looking at treating before it progresses. I believe some types have poor prognosis so it would be nice to start with those.
I have low protein MGUS but slightly elevated Kappa FLC and K/L ratio & B2M, neutrophils, monocytes & WBC. I am a member of the PROMISE study. A brother had MM, a sister had ALL mutated to AML. I am trying to find out when a bone marrow biopsy is indicated, but my general oncologist says not until its become full blown MM according to serum values! I want to know my baseline at least. Should I get a 2nd opinion?
UPDATE. Finished stem cell transplant for MGRS, plus four months of conditioning chemo. Will restrt chemo after bone marrow biopsy in September. Please pay very close attention to MGUS, especially if you start showing problems with kidneys. My cryoglobulins that are a marker for MM if over 10%, are just at ten percent. I barely, barely, have MM, but it is beginning to look like I had MGRS for years. Don't let doctors discount your MGUS if numbers are low. Make sure attention is also paid to kidneys and anemia.
@@EL-yi6df A regular CBC blood panel will tell if you are anemic, but not what type of anemia. If a regular CBC shows anemia, more in depth testing is needed. MGUS can cause an anemia called Anemia of chronic disease", or inflammatory anemia. In this anemia there is not low iron. The cells can't process iron because of disease. Treat the disease and it treats the anemia.
@@phebagirlsmith3228 First of all, thank you. My story. 24 years ago colon cancer, hemicolectomy and 5-FU chemotherapy. Regular colonoscopies and Upper GI OK since then. Regular visits at the oncologist for the first 10 years. Yearly family physician visits and full lab tests (CBC, liver panel, lipid panel, renal panel, etc.), including CEA, PSA, CA19. 20 years ago I ask to be seen by a hematologist as my my hemoglobin was around 13. You're OK was the answer. No further investigations. 2 years ago I visited the same hematologist (who became a professor in the meantime) for the same. You're OK was the answer. No further investigations. 2 years ago I visited the neurologist pointing out to dizziness. You're are OK was the answer. No further investigations. 2 weeks ago I visited the same hematologist for the the same. This time and for the first time I was asked to do plasma cell blood tests and 24 hour urine. Bad: Neutrophils% 43.8, Hemoglobin 13.3, Free Kappa serum 105, Kappa/Lambda ration 8.98. Pep-prot electroph. urine still in the works. Then back to the hematologist. Good: Everything else. I am appalled and frustrated no plasma cell tests were included in my yearly lab tests. I think my health profile would had mandated plasma cell tests. It seems you're quite experienced with the topic. So, what you think? Thanks a lot.
@@marywilliams9858 Smoldering myeloma is considered a middle ground between MGUS and multiple myeloma. You can learn more about this in this article: healthtree.org/myeloma/community/articles/smoldering-myeloma-what-we-know-where-going
I was diagnosed with MGUS in 2020. I am 58. I see my oncologist every four months for bloodwork. I have pain that is being diagnosed as arthritis. Suddenly I can barely walk due to pain in my left foot. Seeing podiatrist. Nothing he is doing is working. Additional I have pain in my back for approximately ten years. It was only due to neuropathy in my left foot that jumped to my right foot that my doctor ran tests and found MGUS. So many pain issues I should not be having at such a young age. I always wonder if they are connected to the MGUS.
My husband has MGUS and I am watching him wasting aware he has so much bone pain and other health problems prostrate problems incontinence and heart problems
God bless him every day. There is a NEW NON-ADDICTIVE pain medication . I think it's called colmodine. Made in the U.S. God bless all the myeloma sufferers.
Sorry about your experience.I’m trying to understand my bloodwork because it came back with a link to multiple myeloma but the Drs seem to be ignoring the results .
Diagnosed with MGUS 16 years ago. Health issues all of the time. Polymyalgia Rheumatica/Giant Cell Arteritis. Age 68, non- smoker, no alcohol. Not obese. Not diabetic. CKD, with MGRS, a new and distinct diagnosis for MGUS/MM. MGRS (Monoclonal Gammopathy of Renal Significance). Just on the edge of having MM. Diagnosed with kidney and bone biopsy. Chemotherapy begins as soon as blood test for cryoglobulin comes back. MGUS can be harmless with no symptoms. For me, it has been a nightmare for 16 years. Can't begin to tell you how many doctors told me I was just "deconditioned", and needed more exercise. Have Anemia of Chronic Disease for at least 10 years. MGUS is not always a simple blood "quirk". MGUS is a serious medical condition and like the doctor states, deserves more preventative attention.
Like me. IgG Kappa discovered in 2018. I had it almost certainly 6 years before. It's progressing very slowly from Kappa 37 mg/l to 84 mg/l today. Diabetes will kill me first, probably
UPDATE: Cryoglobulins at 10%. Diagnosed with MGR as cause of CKD. Last month had stem cell transplant after four months of reduction chemo. In "recovery" from stem cell. Just horrible. .
@@phebagirlsmith3228 Chin up ! There are people worse than me and possibly you.
@@stephenrichards5386 Recovery period would not be so bad, except I had a dumb accident first night home from hospital. I got out of bed confused and disoriented (first night home in 3 weeks). I tripped on a chair in the bedroom, fell, and broke my nose. I am having a lot of discomfort from my own shortsightedness. I should have awakened hubby to help me.
What is MGUS?
Recently diagnosed with mgus. This is one of the best videos I've seen 👏
How r u doi ng
UPDATE: Bone biopsy in September showed zero cancer cells, so all good. Back on maintenance chemo. wiped out immune system Started IVIG transfusions for immunity. Please folks, if you have MGUS, do not discount it as a harmless anomaly. Keep an eye on it, especially anemia and kidney issues. The two red flags that helped me get diagnosed. I had MGUS for over 20 years.
I suppose it'd help if I understood what the big names meant, but one thing that listening to all this has done for me, is increase in me a trust that most doctors really *do want us well!
I'm waiting on my myeloma scan result and thought I'd check out things related, whilst waiting.
If you want to understand all of the complicated terms we have a course on the basics of myeloma that will help you to get a better grasp. healthtree.org/myeloma/university/courses
I have MGUS, I’m excited that they are looking at treating before it progresses. I believe some types have poor prognosis so it would be nice to start with those.
I was diagnosed with MGUS in August 2018, and then in 2020, it progressed to smoldering multiple myeloma 😢
I have low protein MGUS but slightly elevated Kappa FLC and K/L ratio & B2M, neutrophils, monocytes & WBC. I am a member of the PROMISE study. A brother had MM, a sister had ALL mutated to AML.
I am trying to find out when a bone marrow biopsy is indicated, but my general oncologist says not until its become full blown MM according to serum values! I want to know my baseline at least. Should I get a 2nd opinion?
I would most definitely get a second opinion.
UPDATE. Finished stem cell transplant for MGRS, plus four months of conditioning chemo. Will restrt chemo after bone marrow biopsy in September. Please pay very close attention to MGUS, especially if you start showing problems with kidneys. My cryoglobulins that are a marker for MM if over 10%, are just at ten percent. I barely, barely, have MM, but it is beginning to look like I had MGRS for years. Don't let doctors discount your MGUS if numbers are low. Make sure attention is also paid to kidneys and anemia.
How is diagnosed anemia?
@@EL-yi6df with blood testing
@@phebagirlsmith3228 Which blood tests?
@@EL-yi6df A regular CBC blood panel will tell if you are anemic, but not what type of anemia. If a regular CBC shows anemia, more in depth testing is needed. MGUS can cause an anemia called Anemia of chronic disease", or inflammatory anemia. In this anemia there is not low iron. The cells can't process iron because of disease. Treat the disease and it treats the anemia.
@@phebagirlsmith3228 First of all, thank you. My story.
24 years ago colon cancer, hemicolectomy and 5-FU chemotherapy. Regular colonoscopies and Upper GI OK since then. Regular visits at the oncologist for the first 10 years. Yearly family physician visits and full lab tests (CBC, liver panel, lipid panel, renal panel, etc.), including CEA, PSA, CA19.
20 years ago I ask to be seen by a hematologist as my my hemoglobin was around 13. You're OK was the answer. No further investigations.
2 years ago I visited the same hematologist (who became a professor in the meantime) for the same. You're OK was the answer. No further investigations.
2 years ago I visited the neurologist pointing out to dizziness. You're are OK was the answer. No further investigations.
2 weeks ago I visited the same hematologist for the the same. This time and for the first time I was asked to do plasma cell blood tests and 24 hour urine.
Bad: Neutrophils% 43.8, Hemoglobin 13.3, Free Kappa serum 105, Kappa/Lambda ration 8.98. Pep-prot electroph. urine still in the works. Then back to the hematologist.
Good: Everything else.
I am appalled and frustrated no plasma cell tests were included in my yearly lab tests.
I think my health profile would had mandated plasma cell tests.
It seems you're quite experienced with the topic. So, what you think?
Thanks a lot.
I know that stress was one of main causes for my progression 😮
What are the root causes of multiple myeloma. Is it genetic or due to some other factors?
I have smoldering MM. I have had a fracture and have anemia.
We are here for you!
What does smouldering myeloma mean?
@@marywilliams9858 Smoldering myeloma is considered a middle ground between MGUS and multiple myeloma. You can learn more about this in this article: healthtree.org/myeloma/community/articles/smoldering-myeloma-what-we-know-where-going
How is diagnosed anemia?
I was diagnosed with MGUS in 2020. I am 58. I see my oncologist every four months for bloodwork. I have pain that is being diagnosed as arthritis. Suddenly I can barely walk due to pain in my left foot. Seeing podiatrist. Nothing he is doing is working. Additional I have pain in my back for approximately ten years. It was only due to neuropathy in my left foot that jumped to my right foot that my doctor ran tests and found MGUS. So many pain issues I should not be having at such a young age. I always wonder if they are connected to the MGUS.
Smoldering Myeloma sounds bad
My husband has MGUS and I am watching him wasting aware he has so much bone pain and other health problems prostrate problems incontinence and heart problems
We are here for you!
God bless him every day. There is a NEW NON-ADDICTIVE pain medication . I think it's called colmodine. Made in the U.S. God bless all the myeloma sufferers.
Sorry about your experience.I’m trying to understand my bloodwork because it came back with a link to multiple myeloma but the Drs seem to be ignoring the results .