Signs and Symptoms
by Biblia KimThe symptoms of MDS will vary depending on the severity of the disease. Nearly half of those with MDS display no symptoms upon initial diagnosis.
Anemia, or low red blood cell count, cause the most common symptoms because red blood cells are responsible for distributing oxygen throughout the body. In MDS, the percentage of healthy red blood cells is below normal; therefore, the body does not receive adequate oxygen.
Signs of anemia include:
- Chronic tiredness or fatigue
- Shortness of breath
- Heart palpitations
- Pale skin
- Chilled sensations
- Cardiovascular symptoms, such as chest pain (older patients)
Neutropenia, or a low white blood cell count, is another symptom of MDS. A shortage of white blood cells, which are responsible for fighting infections, increases the likelihood of acquiring an infection or fever. Of the various types of white blood cells, most people with MDS lack neutrophils, rather than lymphocytes, making them more susceptible to bacterial than viral infections. It is possible to have a defective immune system despite normal neutrophil counts.
The common infections associated with neutropenia include:
- Skin infection
- Sinus infection accompanied by nasal congestion
- Lung infection accompanied by shortness of breath or a cough
- Urinary tract infection accompanied by frequent and painful urination.
Thrombocytopenia, or low platelet count, is also a symptom of MDS. Platelets are responsible for blood clotting.
People with MDS have a greater frequency of the following symptoms:
- Nosebleeds (epistaxis)
- Bleeding gums
- Flat, pinpoint bruises
- Rashes of small red dots(petachiae).
Less common signs of MDS include:
- Enlarged spleen (splenomegaly)
- Enlarged liver (hepatomegaly)
- Abnormal shape or size of cells
- Chromosomal abnormalities.
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- MDS Patients Dependent On Multiple Transfusions Have Shorter Survival Time
- Recurring Sweet Syndrome Linked To MDS
- MDS Prevalence May Be Higher Than Previously Thought
I am a Hospice nurse who just admitted a patient with MDS, her husband ask the question “What are we to expect as she progresses to end of life?” I am not familiar with the progression of MDS, so I told him that I would find out. I have been researching but unable to find specifics of “end of life.” Can someone help me?
Dear Valerie,
We recommend speaking with the physician who treats your patient for MDS. Her oncologist may be able to provide you with information based on her specific case.
A representative from the Aplastic Anemia & MDS International Foundation’s help-line (1-800-747-2820) explained that MDS patients typically experience fatigue from low oxygen and red blood cell counts and are very susceptible to infections due to low white blood cell counts. Patients rarely die from MDS directly, but infections are typically what cause a patient to pass. Patients can receive transfusions at an outpatient infusion center to help alleviate fatigue, but patients who have received 15-20 transfusions (~1 year’s worth) may be at risk of iron overload. Excess iron binds to major organs (heart, kidneys, and liver) and can cause complications. Near the end of life, patients sometimes experience joint or muscle pain, and they may experience ulcers in the mouth or bleeding gums from low platelets.
Please feel free to let us know if we can help you with any other questions, or visit the AA&MDSIF’s Online Learning Center or call their help-line.
Thanks for helping your patient and her family through this difficult time.
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