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Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: Mar 31 3:15pm | Replies (51)

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@colleenyoung

@mkt24,
Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed or don't work properly. Myelodysplastic syndromes result from something amiss in the spongy material inside your bones where blood cells are made (bone marrow). (https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977)

Approximately 10–20% of patients with myelodysplastic syndrome (MDS) also have autoimmune diseases (AD) which can be challenging to recognize. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3699612/)

Has any treatment been recommended for you? Did you have a pre-existing autoimmune disorder before being diagnosed with MDS?

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Replies to "@mkt24, Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed..."

Am 0n Aransep injection 300 mg ( 12 years)

At first they said I was autoimmune said stay out of crowds no church, no restaurants grocery stores,etc.
anemic then had blood transfusion then iron infusions . Wanted to start inquoivi and one or two other high powered and expensive drugs. I said no-I’m not a Guinea Pig. My hemoglobin is holding steady at 10. Have weak days, nausea and headache often . No stem cell surgery or other invasive procedure.
I go to Texas oncology. Just doing best I can. Am 85 years young.
Repair people want to overcharge us elders and cities don’t have transportation for us to get to the many appointments we need to get to for medical treatments. Group homes 0ly transport 12 miles from facilities. Few indoor heated pools. They are excited they provide 3 meals a day for $4,000 month!!!!!
Now I live alone with one day, 4 hours shift, woman to clean house and take me to store or labs for every other week blood draw.
I can no longer walk far because of hip bursitis. Did have various untrained physical therapists but they forget to show up and I really would be better off in a heated pool or have a massage therapist.
Ah well we can keep looking.

I contacted MDS after having surgery for a growth in my colon. I now have anemia with low counts of hemoglobin. Too old for stem cell transplants (86). giving chemo a try starting
Monday.