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Anyone have or heard of MDS with 5q-syndrome?
Blood Cancers & Disorders | Last Active: Mar 22 9:54am | Replies (35)Comment receiving replies
Good morning, @usmcmom. I’ve been reading through several of your posts about your diagnosis with MDS almost a year ago. What’s troubling me is that you’ve mentioned a couple of times that you’re asymptomatic…that means without symptoms. Which surprises me because with requiring weekly blood labs, frequent transfusions, taking meds to increase your red blood cells and your white blood cells, from personal experience with AML, those are definitely symptoms of your diagnosis.
If you’re thinking about having a BMT at Mayo-Jacksonville, here’s a link to get you started with initiating a request for an appointment. You don’t need a referral but it can help to have one from your oncologist. http://mayocl.in/1mtmR63
Do any of your blood tests show the presence of blast cells?
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I’m not sure about that, but I don’t get tired or have fatigue. I do work with 3 to 5 year olds as a health assistant, wearing an N95 mask. If I feel I need to rest when I get home from work, I already told my oncologist and team, that I will rest for awhile. I also have a voracious appetite and I am not supposed to get really hungry either. Looks like I am breaking some molds for MDS-syndrome #5. I just don’t want to have another stroke with going every week going 2X a week as opposed to
the last time of 3X a week and having a mass on my right side of my brain and not being able to move my left side. ( Not losing speech or consciousness either).
No heart problems - did a 28 day MCOT monitor and heart is in the normal range for everything. I have no idea!