Magic Bob,
There are a couple of ways to think about all the medical terms you see here, even though we're mostly patients and caregivers without any medical training. The first is that you can put all of your trust in your doctor, do what he/she says, and ignore all the medical talk. Many people are happy to handle things that way and it certainly prevents you from obsessing over test results as many of us are often tempted to do.
However, most people who come to Marrowforums are the types who want to know more. We each learn a bit at a time so we can better understand the doctor, feel a little more in control of our destinies, can celebrate the ups and accept support during the downs, can explain what's happening to our bodies to family members, and in some cases can really be a partner with the doctor in making treatment decisions.
The most important numbers are the basic blood counts that you see on a CBC (complete blood count) report. Your doctor will give you a copy of your CBC test results if you ask. Maybe you've already done this. The main counts you want to look for are:
- RBC (red blood cell count), HGB (hemoglobin), and HCT (hematocrit) -- low counts would explain your being tired and out of breath
- WBC (white blood cell count) - protecting you from infections
- PLT (platelet count) -- helping blood clot
You can read about these measures at many websites. For example, there's a good rundown at
Medicinenet and there's an old but still very readable article from the
National Institutes of Health. Low counts are a symptom of MDS. Be aware that the treatment you are getting may make your counts lower at first instead of boosting them. Kind of ironic, isn't it? What you are looking for is improvement and higher counts over time.
IPSS scores help the doctors classify your MDS and put you in statistical categories, and there are other scoring systems they can use, but what's most important is how YOU are doing and what care YOU should have, not which categories you fall info. The scores may give clues to the best treatment and that's why they are useful to the doctors.
If you want to learn more about the disease you can read about MDS
here at Marrowforums, get
Your Guide to Understanding MDS from the Aplastic Anemia & MDS International Foundation, and/or read
Understanding Myelodysplastic Syndromes: A Patient Handbook from The MDS Foundation. If you get through all of that then you know more than the average patient!
You can also post questions you have here and we'll share what we've each learned from our own experiences. Your doctor is the real authority but many of us have learned enough to answer questions, especially about the jargon we all keep hearing. It's a lot easier to ask about what's on your mind than to go off researching every question on your own!