• People with myelodysplastic syndrome (MDS) have low blood cell counts, which can lead to different symptoms.
• Since symptoms seen in MDS can also be associated with other health conditions, it may be difficult to know what’s causing symptoms.
• If you suspect that you have MDS symptoms, tell your health care provider.

Myelodysplastic syndrome is a group of rare blood disorders. People with MDS have too many blood cells that look immature (not fully developed) and low levels of healthy blood cells. When the body has too many abnormal blood cells and not enough healthy blood cells, it can’t carry out its usual functions as well. This can lead to a wide range of MDS symptoms.

Many people with MDS do not have symptoms when they are diagnosed. It’s important to recognize potential symptoms if they develop and report them to your doctor right away. The appearance of symptoms may indicate that it’s time to consider starting treatment for MDS.

Possible MDS Symptoms

MDS develops in the bone marrow — the soft, spongy tissue found within certain bones. Bone marrow cells are responsible for blood cell production. When these bone marrow cells develop abnormalities (dysplasia), they don’t produce enough of one or more of the three main types of blood cells: red blood cells, white blood cells, and platelets.

Low levels of each of these cell types can lead to a specific set of symptoms. There are different types of MDS, which could affect each blood cell type in distinct ways and lead to varying symptoms.

Symptoms Caused by Low Red Blood Cell Levels

Red blood cells are the most common blood cell type. These cells attach to oxygen molecules in the lungs and then carry the oxygen to tissues throughout the body. Red blood cells also bring carbon dioxide from cells back to the lungs, where it is released.

MDS may lead to anemia, or reduced red blood cell counts. In many cases, people with MDS experience signs of anemia before other symptoms. Anemia can cause several symptoms, including:

• Fatigue (tiredness)
• Having less energy for exercise or physical activity
• Pale skin
• Reduced appetite
• Weight loss
• A fast heart rate
• Breathing problems such as shortness of breath
• Difficulties focusing

Having anemia does not necessarily mean that you have MDS. Other conditions can cause red blood cell levels to drop, including:

• Stomach ulcers when they bleed
• Colon polyps or colon cancer due to bleeding
• Deficiencies (low levels) of iron, folate, or vitamin B12
• Heavy menstrual periods
• Frequent pregnancies
• Other blood or marrow disorders, including aplastic anemia, sickle cell anemia, or thalassemia
• Other blood cancers such as leukemia, lymphoma, or multiple myeloma

If you notice any symptoms of anemia, contact your doctor. Your doctor can ask questions and run tests to determine what is causing your anemia and help you come up with a treatment plan.

Signs of Low White Blood Cell Levels

White blood cells are a part of the body’s immune system. They recognize and destroy germs such as bacteria and viruses, and they kill infected cells within the body. White blood cells also get rid of old or dead cells and help fight cancer.

There are several different types of white blood cells, and each has a different role. Important ones are neutrophils, which start fighting an infection when a germ enters the body and prompt other white blood cells to respond.

Lymphocytes, including both T cells and B cells, are another type of white blood cell that target cancers and larger invaders like tuberculosis. Other types of white blood cells also help protect against infection.

Some people with MDS develop neutropenia, or low numbers of neutrophils. This may lead to frequent infections, which can have different symptoms depending on where the infection occurs:

• Sinus infections — Stuffy or runny nose
• Bladder infections — Painful or frequent urination
• Vaginal infections — Itching or changes in vaginal discharge
• Lung infections — Pneumonia, breathing problems, coughing, or chest pain
• Skin infections — Pain, tenderness, swelling, or redness
• Infections in the mouth — Mouth sores, toothaches, or a sore throat

Neutropenia may also cause symptoms like fever, chills, sweating, abdominal pain, diarrhea, or pain or sores near the anus.

Neutropenia can be caused by other health conditions, including:

• Infections that lower white cell counts, like Lyme disease, tuberculosis, or hepatitis
• Autoimmune disorders, such as lupus, rheumatoid arthritis, or inflammatory bowel disease (IBD)
• Vitamin or mineral deficiencies, including low levels of folate, vitamin B12, or copper
• Other blood cancers
• Other types of cancer that have spread to the bone marrow
• Cancer treatments, such as chemotherapy and radiation therapy

People with neutropenia develop similar symptoms whether their low white blood cell count is caused by MDS or another condition. If you are experiencing neutropenia symptoms, talk to your health care team. They can help determine your white blood cell levels and find out the cause if levels are lower than expected.

Symptoms Linked to Low Platelet Levels

Platelets are often referred to as blood cells, but they are technically tiny pieces of a cell. They are made by megakaryocytes, large cells that live in the bone marrow. Platelets are responsible for clotting blood.

When an injury occurs and a blood vessel is damaged, blood will spill out. Nearby platelets become activated, sticking to the blood vessel wall and to each other until a clot forms over them, plugging the hole and preventing blood loss.

Thrombocytopenia, or low platelet counts, sometimes results from MDS. People with thrombocytopenia may experience:

• Frequent, easy bruising
• Bleeding more than usual from a small cut
• Nose bleeds
• Petechiae (small red dots under the skin)
• Bleeding gums
• Heavy menstrual periods

People with MDS who have extremely low platelet levels may be at risk for serious bleeding problems — including bleeding in the brain, which is rare. If you experience bleeding that won’t stop, seek emergency medical care.

Other conditions, many of which are more common than MDS, can also lead to thrombocytopenia. Symptoms that point to low platelet counts can also be caused by:

• Drinking too much alcohol
• Autoimmune disorders
• Splenomegaly (an enlarged spleen), which can be caused by liver damage or some types of blood cancer
• Viral infections, like Epstein-Barr virus, hepatitis C, or HIV
• Exposure to certain chemicals, such as arsenic or pesticides
• Certain medications, including heparin, antibiotics, and antiseizure drugs
• Other blood cancers or blood disorders
• Cancer treatments or drug reactions

Tell your doctor if you are experiencing bruising or bleeding problems. Without additional testing, it’s hard to know whether these symptoms are caused by MDS or something else.

What To Do if You Suspect MDS Symptoms

Tell your doctor about any symptoms you have that may be related to MDS. These symptoms can often be caused by other conditions, so it may be difficult to know what is causing any changes in health.

Your doctor may perform a bone marrow biopsy and recommend starting treatment if you develop symptoms of MDS. There have been several recent advances in MDS treatment options.

If you’re ready to discuss treatment for MDS with your doctor, this discussion guide can help.

Talk With Others Who Understand

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