MDS symptoms

Myelodysplastic syndrome (MDS) used to be known as “pre-leukemia,” or sometimes “smoldering leukemia.” MDS is a group of blood disorders that can cause you to have low levels of:

  • red blood cells
  • white blood cells
  • platelets

Symptoms of MDS can vary depending on which type (or types) of blood cells are affected. Many people with MDS have no symptoms, or only experience mild symptoms at first.

Possible MDS symptoms include:

1. Fatigue and shortness of breath

MDS can cause low levels of red blood cells, a condition known as anemia. Red blood cells are important because they carry oxygen and nutrients throughout your body.

Other symptoms of anemia include:

  • pale skin
  • lightheadedness, dizziness
  • cold hands and feet
  • general weakness
  • irregular heartbeat
  • headache
  • chest pain

Symptoms of anemia tend to get worse over time.

2. Unexplained bruising or pin-point spots

You may experience some skin symptoms if MDS causes thrombocytopenia, or low levels of platelets. Platelets are an important component of your blood that enable it to clot. Problems with blood clotting can cause bleeding into your skin, leading to unexplained red, brown, or purple bruises, known as purpura, or red or purple pinpoint spots, known as petechiae.

These pinpoint spots may be raised or flat on the skin. They usually aren’t itchy or painful, but they stay red even if you press on them.

3. Bleeding easily

Low platelet levels can cause you to bleed easily, even after just a minor bump or scrape. You may also experience spontaneous nosebleeds or bleeding gums, especially after dental work.

4. Frequent infections and fever

Frequent infections and fever may be caused by low levels of white blood cells, also known as neutropenia. A low white blood cell count is known as leukopenia. White blood cells are an important part of your immune system, helping your body fight off infection.

5. Bone pain

If MDS becomes severe, it can cause bone pain.

MDS is caused by defective bone marrow stem cells. Bone marrow is the material found inside your bones. It’s where your blood cells are made. Stem cells are a type of cell found in your bone marrow that are responsible for producing your blood cells.

In MDS, these bone marrow stem cells start producing abnormal blood cells that aren’t properly formed and die too quickly or are destroyed by your body. This leaves your body with too few functioning blood cells to carry oxygen, stop bleeding, and fight infections.

It’s not always known what causes the defective stem cells, although scientists think that genetic mutations may be the cause. There are two classifications of MDS. Most people have primary MDS, or de novo MDS. In primary MDS, the defective bone marrow stem cells have no known cause.

Secondary MDS is treatment related. It usually occurs in people who have been treated for cancer. This is because chemotherapy and radiation therapy can damage the stem cells in your bone marrow.

Several factors can increase your risk of developing MDS:

  • previous treatment with chemotherapy
  • previous radiation therapy or other long-term exposure to radiation
  • long-term exposure to high levels of benzene or toluene

About 86 percent of people diagnosed with MDS are over age 60. Only 6 percent are under age 50 when diagnosed. Men are more likely than women to develop MDS.

If you are at higher risk of developing MDS and have some of the symptoms, make an appointment to see your doctor.

Since many people with MDS have no symptoms, or only minor symptoms, a routine blood test is often your doctor’s first clue that something is wrong. In MDS, blood counts are usually low. But in some cases, the white blood count level or platelet counts are higher than normal.

Your doctor will have you take two other tests to check for MDS: a bone marrow aspiration and a bone marrow biopsy. During these procedures, a thin, hollow needle is inserted into a hip bone to remove a sample of marrow, blood, and bone.

A microscopic analysis of the chromosomes, known as a cytogenetic study, will reveal the presence of any abnormal bone marrow cells.

An allogeneic blood and marrow transplantation (BMT), also known as a bone marrow transplant or stem cell transplant, is the only potential cure for MDS. BMT involves using high-dose chemotherapy drugs followed by infusion of donor blood and bone marrow. It can be a dangerous procedure, especially for older adults, and isn’t appropriate for everyone.

When BMT isn’t an option, other treatments can reduce symptoms and delay development of acute myeloid leukemia (AML). Some of these are:

  • transfusion therapy to increase the number of red blood cells and platelets
  • antibiotics to prevent infection
  • chelation therapy to remove excess iron from the blood
  • growth factor therapy to increase the number of red or white blood cells
  • chemotherapy to kill or stop the growth of fast-growing cells
  • epigenetic therapy to stimulate tumor-suppression genes
  • biologic therapy to improve red blood cell production in people missing the long arm of chromosome 5, otherwise known as 5q minus syndrome

Symptoms of MDS and early AML are similar. About one-third of people with MDS eventually develop AML, but early treatment for MDS can help delay onset of AML. Cancer is easier to treat in the earliest stages, so it’s best to get a diagnosis as quickly as possible.