Signs and Symptoms

Published: May 1, 2009 12:00 am

The symptoms of myelodysplastic syndromes (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.

Diagnosis »

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  • valerie said:

    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?

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    Julie Shilane said:

    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.

  • Donna Smith said:

    My brother died of MDS & my sister also. Now I have started with having Anemia. Can this be family related? Also my body aches all over. Also fatigue. I AM 73 YEARS OLD.

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    Julie Shilane said:

    Dear Donna,

    Dr. Amelia Langston from Emory Winship Cancer Institute said, “MDS can rarely run in families, usually in association with specific chromosome abnormalities in the marrow. Inherited cases tend to occur at a younger age than the average for MDS, but this is not always the case. If you are anemic and there is not an explanation such as a vitamin or mineral deficiency or other illness, I might suggest a formal consultation with a hematologist.”

  • Scott Kennedy said:

    A family member is age early 80′s, transfusion dependent, but extremely healthy other than MDS,and has had both Vidaza and Dacogen courses in the past 18 months with no significant effect.

    It sounds like the effect of age on stem cell transplant success is being reconsidered. Is stem cell transplant in octogenarian patients presently being contemplated anywhere ? Is there the opportunity for this age group to receive stem cell transplant treatment by research protocol?

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    Julie Shilane said:

    Dear Scott,

    Dr. Amelia Langston from Emory Winship Cancer Institute said, “It is becoming more and more clear that comorbidities are far more important than age. That having been said, folks in their 80′s are rarely considered. I would suggest an evaluation at the Fred Hutchinson Cancer Ctr. They have protocols that would be most likely to be applicable.”

  • Scott Kennedy said:

    Thank you for this information.

  • Karen said:

    I was diagnosed with MDS in2002, I am now in the process of a stem cell transplant. My brother has the same, he had his transplant 12-09. My other brother died from orqan failure due to Luekemia at the age of 53. I was 48 when I was diagnosed, my brother was 53.

  • myrna james said:

    Just discovered this website.
    I have a friend who has MDS q-5. She is 81 and is now transfusion dependant. She is on Revlimid 5mg every other day after they had to stop treatment. They had to pause treatment for about 10 days to allow kidney function to improve.
    She is now showing 1+ polychromasia. Is this likely showing that her B.M. is now producing normal rbc’s?
    I think that “active” B.M. in an 81 yr old is about 25%. I thought this might be a reason it takes another cycle or two with Revlimid before she can become transfusion independant.
    Thanks for any comment/
    She is also healthy and very active otherwise and inspite of a Hgb range of 7.5 and 8.5

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    Julie Shilane said:

    Dear Myrna,

    Dr. Amelia Langston from Emory Winship Cancer Institute said, “Most patients with 5q- respond within a month to 6 weeks on drug, but it sounds like her therapy has been quite interrupted. I would give her at least 6 weeks of being on drug at a tolerated dose and schedule before calling it quits—that is as long as the other blood counts (hemoglobin and white blood count) are holding up.”

  • Myrna James said:

    Hi Julie,
    Thanks for that info. I’m wondering if the fact that this friend is 81 and the amt of active bone marrow is reduced might also be a factor in response to Revlimid? I believe the doctor is trying her at 5 mg every other day for the next month and then may switch to Vidaza.
    Thanks again for you information.

  • sue moerschell said:

    Has anyone heard of LBH589 the Dr. wants to treat my mom. They don`t know if she has MDS or AML.
    Thanks for any info,

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    Julie Shilane said:

    Dear Sue,

    LBH589 is also known as panobinostat, which is being developed by Novartis. Panobinostat, as a single agent, has shown potential in Phase 1 trials involving patients with Hodgkin’s lymphoma, multiple myeloma, AML, and prostate cancer. Panobinostat is also being studied alone or in combination with other treatments for MDS and various other cancers (see for a listing of trials). For MDS and AML patients, panobinostat is being studied alone as well as in combination with Vidaza (azacitidine), Dacogen (decitabine), or erythropoietin stimulating agents.

  • Susan Luke said:

    I have had MDS for about 18 yrs now. I had treatment at the NIH which was the ATG serum and cyclosporin. That was 7 yrs ago. I did really good, no transfusions. Now I have just been diagnosed with RAEB-1. I am wondering if there is a treatment available – Thank you

  • Avatar image
    Julie Shilane said:

    Dear Susan,

    Dr. Amelia Langston from Emory Winship Cancer Institute said, “This is a scenario that we sometimes see, and there are treatments. It is important that you see a hematologist who can look at all of your records and consider which options might be most appropriate for you.”

    Dr. Mikkael Sekeres from the Cleveland Clinic said, “Sure – in the setting of excess blasts, standard therapy is considered one of the hypomethylating agents – Vidaza (azacitidine) or Dacogen (decitabine), either of which can be administered closer to home (e.g., you do not have to go to the NIH). Make sure you find out your cytogenetics status, too.”

  • Susan L said:

    Thank you Dr Langston and Dr Sekeres for your responses. I now have a
    new oncologist and I am starting Dacogen treatment on Monday. I will let you know how I am doing. I have had my cytogenetics done and now have 3 chromosome changes that are new for me. Still not too sure what that is meaning, but am hopeful with the treatment plan. Thank you.

  • kathy said:

    My father died in 2005 of MDS. He worked in an auto factory…could chemicals have contributed to this disease? Also, he complained of a fullness in his upper right abdomen for a couple years before he was diagnosed. His cancer doctor told him that that was common with patients suffering from MDS. I see nothing on any web sites about that now but 5 years ago it was mentioned as a symptom. Can you comment please on these two things? Thank you

  • MDs Beacon Staff said:

    Hi Kathy,

    Dr. David Steensma from the Dana-Farber Cancer Institute said:

    “While the cause of MDS is unknown in most cases, there is suspicion that exposure to certain chemicals that can damage DNA and injure bone marrow cells may contribute to development of the disease. This is a controversial area, however. It is well recognized that exposure to toxic hydrocarbons such as benzene and certain industrial solvents can cause bone marrow failure. However, many patients who work in factories or other settings where they are at risk for such exposures never get MDS or other blood problems, so there must be other factors involved. Ongoing epidemiological and genetic studies may help answer some of the important questions about how MDS develops.

    I am not certain what caused the sense of fullness in your father’s upper right abdomen. This symptom suggests enlargement of the liver, which is uncommon in MDS. Some patients with MDS who have received many red blood transfusions will develop deposits of iron in the liver, which can contribute to liver enlargement.”

  • Margie said:

    My father was diagnosed in 2004 with MDS. At the time, he was having “black outs” and was anemic. His blood transfussions began roughly every 3 months apart and have progressed to weekly and biweekly needs. He has been hospitalized for infections and GI bleeds. He has really gone down hill this past 6 months and we thought we were going to lose him on several occassions. It amazes me how he can hang on for as long as he has. His doctor now says he is “refractory” – (nonresponsive(?)) and the end is immennent. The information I am about to give you was given to me by my sibling (his caretaker). I was told that his doctor said he had about 2 weeks max. The end will be ugly and painful. He will start having headaches and the pains will move along his back and into other areas of his body. His bone marrow will start to “explode” and the pain would be so severe that he would go into seizures. I will be heading down to be with them in the morning, but I am finding it very hard to accept this ending. It just doesn’t sound plausible and I sometimes think my sibling may be a bit over dramatic. Can anyone verify this scenerio as plausible?

  • wmmc said:

    My father has MDS and we used to share the same doctor. I have had irregular results in my blood work for sometime now with the MCH and MCV. They have always been on the high side. The doctor said “it was too much of a coincidence to be a coincidence” but has now left his practice. I have asked a couple other doctors about it and noone seems to be concerned with it at all. This was the same response they had when my ALT and AGT? were elevated. They were not concerned at all. I watched the numbers climb without any response from my health careproviders. I learned later I had something wrong with my liver.
    Is there a way to diagnose or preferably rule out MDS without a bone marrow biopsy? and what would high levels of MCH and MCV be indicative of?

  • MDS Beacon Staff said:

    Dear Margie,

    We are very sorry to hear that your father does not seem to be responding to treatment any more (refractory is another word for that).

    You may want to read MDS Mitch’s blog MDS Mitch’s blog. It’s just an example of what happened to one person, but we thought you may find it helpful.

    You may also want to consider arranging for hospice for your father to make the coming weeks as comfortable as possible for him.

  • MDS Beacon Staff said:

    Dear wmmc,

    As you probably suspected, the best way to diagnose MDS is via bone marrow biopsy.

    MCV stands for mean corpuscular volume and shows the size of the red blood cells. MCH stands for mean corpuscular hemoglobin and shows the amount of hemoglobin in an average red blood cell. These numbers help in the diagnosis of different types of anemia.

    You may want to ask for copies of your blood tests to see if any of your blood cell counts are low. If they are, we recommend that you see a hematologist.

    We would like to point out that anemia may be a sign for many different diseases, not only MDS.

  • Susan said:

    My mother is 73 and is getting 5 units of platelets and 2 – 3 units of blood per week. Her body is covered in very large black bruises. She is so very weak all of the time. She is blind in one eye due to a burst vessel in there (2nd time first time was repaired before MDS RAEB-1 diagnosis haveing a 1.2 year median life expectency. She is on Revlimid since May with no apparent improvement. She was only diagnosed May 11, 2011. She just found a black spot on he tongue this am.
    Is this end stage MDS?
    What has been the experience of end stages for others?
    Are we looking at days or weeks?
    With almost daily transfusions will the Dr pull the plug on this?

  • MDS Beacon Staff said:

    Dear Susan,

    Dr. Mikkael Sekeres from the Cleveland Clinic said the following:

    “This is a difficult questions to answer. It sounds like, given that frequency of transfusion of blood products, this person’s mother has an advanced form of MDS. It is impossible to say how long she will live, but we probably are not talking on the order of years. People at the end stage of MDS usually are not in pain, but do have episodes of bleeding, infections, and often are quite fatigued. It would be reasonable to consider hospice in such people, but I cannot give that type of advice to someone I haven’t met before.”

  • Susan said:

    Thank you. I didn’t mention in my prior message that she has 5q syndrome as well with all chromosomes showing abnormalties. Mom has chosen to forego all treatment and is on hospice. She was much happier and relieved at making this decision last week. She got pneumonia and is bedridden. She is expected to pass this coming weekend.

  • Theresa said:

    My 71 year old husband was diagnosed with MDS in March 2011 after a stroke in February. He also has myeleoproliferative neoplasms and signs of myeleofibrosis. He was originally on Thalomid 50 mg per day, which was lowered to every other day after a second more severe stroke in July 2011. The doctors attributed the stroke to the low hemoglobin count. As there was no improvement with Thalomid, he was switched to Revlimid 10 mg per day about a 1 1/2 months ago. There does not seem to be any improvement and due to the side effects, the doctor has now lowered it to every other day. He has required blood transfusions (2 units of red blood cells) every two weeks since April,and he has had 2 platelet transfusions as well. I notice that he is even more tired and very short of breath lately, even when his hemoglobin is not so low as to require a transfusion. He is also become confused, his short term memory has been severely affected and he is having more difficulty walking. Sometimes he complains of pains in his lower legs. He has developed a cough in the last few days as well. Are these signs of end stage MDS? What can I expect as he gets closer to the end and is there an estimate of how long patients generally live when treatment is not effective?

  • Sue Baker said:

    My mother was diagnosed with MDS 5 years ago. She also has heart failure. Despite reading many articles I cannot establish whether the severe pain she suffers all over her body is attributable to the MDS, No article states pain as a symptom. Can you help?