MDS and cognitive decline

Hello @bradmm, I am not a medical professional, but the listed symptoms of MDS include:
- Fatigue
- Shortness of breath
- Unusual paleness (pallor) which occurs due to a low red blood cell count (anemia)
- Easy or unusual bruising or bleeding which occurs due to a low blood platelet count (thrombocytopenia)
- Pinpoint-sized red spots just beneath your skin caused by bleeding (petechiae), and
- Frequent infections which occurs due to a low white blood cell count (leukopenia)

Low hemoglobin, otherwise called anemia can include the following symptoms:
- Fatigue
- Weakness
- Pale or yellowish skin
- Irregular heartbeats
- Shortness of breath
- Dizziness or lightheadedness
- Chest pain
- Cold hands and feet
- Headache

@bradmm, have you discussed this with your hematologist? Factors like treatment, aging, or another illness may cause some impairment, but that would be best discussed with your provider? If you are comfortable, are you currently experiencing some cognitive issues in conjunction with your MDS diagnosis?

Thanks, Justin, I'm familiar with the listed symptoms because my wife has been dealing with it for years. Because my wife is the one with the disease, I don't really want to discuss cognitive issues with her oncologist in front of her. She is stressed enough as it is. I asked the question here to see if any other patients had experienced cognitive decline in order to avoid having that discussion in front of her.

That is understandable @bradmm, and I hope my inquiry was not offensive. I would like to invite some of the members who have talked about MDS in the past, perhaps they could share their experiences in regards to your question. @jaylevel1, @cybears, @lithuanian, and @esperanzam have talked about being diagnosed with MDS and may be able to offer some experiences with their MDS and side-effects.

No, not offensive at all, just wanted to clarify that this was about my wife. I would like to hear from actual people with experience with this.

Hi I am new to this site, but I was diagnosed with MDS, specifically RARS in 2013. I have become transfusion dependent for the past 11/2 years. I have been finding that my cognitive abilities have been slipping. I have problems with concentration, memory and at times some mild confusion. I haven't asked my doctor but I feel that it is due to my low oxygen levels when my hgb is low.

Thank you for your reply!

I have MDS and am experiencing cognitive decline. Still working a very stressful job and wish I could retire Sometimes I feel like I’m loosing my mind

That's a hard one to control.... but....You're not alone! My husband's cognitive decline is slow but consistent, starting at the time he experienced excessive fatigue and was diagnosed with MDS. Doctors insist there's no relationship between cognition and low hemoglobin. I'm guessing they're wrong.

Stress, as you know, makes it worse. We've found that avoiding stressful and time-crunch situations and getting plenty of sleep makes it better. And strangely enough, hydration is really important. When eating right, drinking plenty of plain old water, keeping blood pressure down, and planning plenty of time for obligations, it does get better.

I also have mds/rars diagnosis. Started aranesp shots every other week and have had 2 iron infusions. Am holding steady at 7.9 last two shots. I can’t tell whether it’s my brain’s fault or my body’s fault, but I have gone from being a pretty good golfer and tennis player to bring an embarrassment to myself. Cognitive ? Yes. Physical? Yes. Add to that, I’m 78 and have erosive arthritis. But until recently, I was good. Sometimes I think that I just think too much about it.
Compared to the people I see when I’m getting shots and infusions, I need to think less.

I'm interested in this topic, because I have MDS. I have been receiving weekly injections of 40,000 units of Procrit for a couple of years, but my hematologist recently increased the dosage to 60,000 units when my hemoglobin began to drop a bit.

Meanwhile, I've had some concern about my cognitive abilities but have attributed my issues to my being 82 which is still probably one cause of my slow decline. Now, as I read these comments I'm wondering if MDS is also one cause of my memory issues.

So, where can I learn more about MDS and cognitive functioning? I will follow comments here but would also be interested in where I might do research online. I have an appointment with my hematologist next week and will also ask him what he thinks.