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I Was Diagnoised With MGUS And Anemia In April Of 2023, My Anemia Is Not From Low Iron Or B12. The Cause Is Unknown-64 Yr Old Retired Female

A MyMyelomaTeam Member asked a question 💭
Truman, MN

I see my Primary Care Doctor and a Hematologist/Oncologist. My numbers have stayed the same, but I have had symptoms from the beginning that have bothered me. And in the last 4-5 months my lower back is very painful and some days I have trouble even moving. (I have a history of arthritis in my lower back but it has never felt like this) Also I have shoulder pain that radiates down my arm. I also can't walk more than a block without getting very short of breath. Not sure what to do
Thanks for… read more

July 22
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A MyMyelomaTeam Member

Hello Kris4,
During the 2-year interval in which I went from Smoldering MM to MM requiring treatment, at one point I suffered excruciating lower back pain. OTC pain meds did nothing to address the pain. I complained to my general oncologist who prescribed a Fentanyl transdermal patch. It worked! I found an oncologist who specialized in MM. He found that I had 2 compression fractures of my spine. Has your oncologist X-rayed your spine? Or done a CAT scan? Please find a MM SPECIALIST. MM is a fairly rare and complex condition. Although there's no cure, it's treatable. I've lived with it for 14 years. Best wishes.

July 24
A MyMyelomaTeam Member

Hi Kris4: Let your Primary, Specialists & Oncology know. Call them &/or send a message to them on your hospital "My Chart" for an urgent appt. or referral, or go to ER/ED or Urgent Care. You should not suffer unnecessarily. I hope they can help as soon as possible. ❤️🤔

July 22
A MyMyelomaTeam Member

Kris,
A MM Specialist is a Hematologist or Oncologist who only treats MM patients. I’m hoping that is who you are seeing. MM is too complicated and needs a MM Specialist. I had some of your symptoms. I started with MGUS and could not walk very far (1 block). I thought it was from the MGUS but it was my heart or a combination. MM can affect the kidneys and if you have a heart condition, that too affects the kidneys, which can cause a backache. I ended up having a heart attack. I also have severe osteoporosis and osteoarthritis. I had severe pain, which I have controlled with Curcumin, calcium and magnesium supplements and D3 & K2 supplements. Have you had a CT Scan? I think that would help diagnose your issues with your bones. Most people bear the pain as long as they can and then end up in the ER. It’s better to deal with it now. I also take nutritional yeast with a glass of dairy and a teaspoon of unsulphered blackstrap molasses. I’m trying to keep from getting anemic. So far it is working. Keep me posted.💕
Paula🌹

July 22
A MyMyelomaTeam Member

It sounds like you have a complex situation with MGUS and anemia. Here are some relevant points from the knowledge base:

- MGUS (Monoclonal Gammopathy of Undetermined Significance)
- MGUS is a plasma cell disorder that is generally asymptomatic and requires regular monitoring.
- It is considered a precursor to more Show Full Answer

It sounds like you have a complex situation with MGUS and anemia. Here are some relevant points from the knowledge base:

- MGUS (Monoclonal Gammopathy of Undetermined Significance):
- MGUS is a plasma cell disorder that is generally asymptomatic and requires regular monitoring.
- It is considered a precursor to more serious conditions like multiple myeloma.
- Risk factors include older age, African or African-American ethnicity, male sex, and a family history of MGUS.
- Regular blood and urine tests are recommended to monitor for progression.

- Anemia in Multiple Myeloma:
- Anemia is common in multiple myeloma, affecting 60-70% of people at diagnosis.
- Causes of anemia in multiple myeloma include:
- The myeloma itself crowding out the bone marrow.
- Kidney damage caused by multiple myeloma.
- Side effects of treatments for multiple myeloma.
- Nutritional deficiencies (though this is not your case).

- Symptoms and Impact of Anemia:
- Anemia can cause symptoms like lack of energy, dizziness, trouble breathing, and a faster-than-normal heartbeat.
- Severe anemia may require adjustments in medication doses or treatments like erythropoietin injections to stimulate red blood cell production.

Given your situation, it might be beneficial to discuss with your healthcare provider the possibility of further investigations to determine the cause of your anemia and appropriate management strategies.

July 22

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