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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jan 13, 2015, 01:01 PM
Smarti54 Smarti54 is offline
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Angry Postural orthostatic tachycardia syndrome (PoTS)

Anyone experience increased heart rate upon standing or even with minimal exertion when your hemoglobin and hematocrit and almost normal (11/30)? I am constantly tachycardic and short of breath. I had an echo done and have a follow up today. The echo showed a small amount of leaking at my tricuspid valve but otherwise normal. I will know more later but it is accompanied with dizziness and vomiting a few times.
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Sunny age 36 diagnosed Jan 2014 with low grade MDS. Recurrent infections: GI, pyelonephritis and sepsis, then lower GI bleed. PoT syndrome January 2015. WBC 4, RBC 2.6, Hgb 9 Hct 27 platelets 62 MCV 107. Watch and wait. 11/15 BMB showed del(13)(q12-q14)
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Old Wed Jan 14, 2015, 11:35 PM
rar rar is offline
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My heart rate goes up 7 BPM when I stand, my systolic blood pressure goes down 25 mm hg. Doctors are not concerned. What does yours do?

Ray
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  #3  
Old Thu Jan 15, 2015, 03:56 PM
Smarti54 Smarti54 is offline
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Resting heart rate is usually 70 upon standing it goes to 110 and with any movement at all stays around 125. My internal medicine doctor says that's abnormal but he doesn't know why. He is referring me to a heart doctor.
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Sunny age 36 diagnosed Jan 2014 with low grade MDS. Recurrent infections: GI, pyelonephritis and sepsis, then lower GI bleed. PoT syndrome January 2015. WBC 4, RBC 2.6, Hgb 9 Hct 27 platelets 62 MCV 107. Watch and wait. 11/15 BMB showed del(13)(q12-q14)
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  #4  
Old Tue Jan 27, 2015, 08:12 PM
Smarti54 Smarti54 is offline
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PoTS

Well it is official. It is untreatable and incurable. It is usually associated with things like autoimmune disorders (sarcoidosis, lupus, srogjens, ulcerative colitis, crohns, and paraneoplastic syndrome.) It is autonomic dysfunction. My hospital here can not manage it and I am being referred out just to try to get my heart rate to stay around 110. My monitored revealed it stayed around 150 and got up to 210. Prayers please!!
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Sunny age 36 diagnosed Jan 2014 with low grade MDS. Recurrent infections: GI, pyelonephritis and sepsis, then lower GI bleed. PoT syndrome January 2015. WBC 4, RBC 2.6, Hgb 9 Hct 27 platelets 62 MCV 107. Watch and wait. 11/15 BMB showed del(13)(q12-q14)
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  #5  
Old Tue Jan 27, 2015, 08:27 PM
Chirley Chirley is offline
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I have something similar but my heart rate drops instead of increasing. My BP drops to the 70/? and pulse in 40s. It's got to do with autonomic dysfunction. Unfortunately every time I go to hospital they mistake it for some kind of emergency and I have to explain its normal for me and not to panic. It can be a bit amusing really.
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