← Return to Anyone have or heard of MDS with 5q-syndrome?

Discussion
Comment receiving replies
@usmcmom

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!

Jump to this post


Replies to "I’m not sure about that, but I don’t get tired or have fatigue. I do work..."

Where do you get your energy? 😅 Working with 3-5 year olds would drain me completely by the end of the day! You’ve been through so much already with the stroke and recovery. You’re certainly an inspiration with your resilience and perseverance…and definitely not fitting the typical mold of someone with MDS-receiving transfusions and taking meds to boost red/white cells. Sounds like you’re doing everything right! 💕