Desperate and Confused by the Traits. - Sickle Cell Society

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Desperate and Confused by the Traits.

MomDukes76 profile image
2 Replies

Hello,

I am a 40 yo woman that has the sickle cell and alpha thalassemia traits. For the past 5 yrs, I have been experiencing unexplained extremely painful chest pains that kind of feel like Im being choked or something is "leaking" in the base of my neck and throat. "Popping" like pains throughout my chest and legs as well. I have had 2 years of urology appointments for the blood in my urine as well. The fatigue and migraines that accompany are unbelievable. They get so bad I loose vision. Extreme bone pain, like a hot sword is being driven into my leg and arm bones then ripped out. There are even times when my legs just won't cooperate and work properly. Plus I get this " short circuit, zapping feeling throughout my body that drives my kooky.

Im trying to be patient with my Hemologist, Rheumatologist, Cardiologist and Neurologist to complete a work up, but Im starting to feel like Im on the loosing end here. Has anyone else experienced any of this? I would like to "point them in the right direction" before things get too bad.

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MomDukes76 profile image
MomDukes76
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2 Replies
JOI90 profile image
JOI90

Hello, I have the trait and alpha thalassemia. I experience the same exact thing. Chest and back pain. pain in my legs shortness of breathe migraines and headaches. But all my doctors are very discouraging and make me to seem like I am lying or a drug addict. The pain at times is unbareable

MomDukes76 profile image
MomDukes76 in reply to JOI90

Indeed. I also hear some question if one can have just the trait of SC and AT while experiencing "crisis". Or maybe you have full blown SC. I am constantly having blood in my urine among other things. For 39 years of my life I was anemic, suddenly I'm not. Was diagnosed with SLE (Lupus) 7 years ago, fibromyalgia 5 years ago. I had a stroke a year ago as well. I just pray my doctors here in San Antonio can help me. This is not the quality of life one should be living while my docs play guess the diagnosis.

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