Not understanding: I'm 46yrs. Old. I... - Sickle Cell Society

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Not understanding

Maurethiahollins profile image

I'm 46yrs. Old. I just got a test done for Sickle Cells. The doctor's assistance called to tell me first that I tested positive for Sickle Cell, then called me back to tell I shouldn't worry it's just might be the trait. I've been in pain all my adult life. I have yellow eyes, have chronic pain daily, but nobody can tell me anything, but don't worry. I haven't work since 2012 because of the pain,sick, vision blurred, and Dizziness. I want to work. I'm not lazy. But my head hurts some bad that I throwup and can't see. What can I do? Please someone help me. I can't take this pain. I've been to the hospital for heart problems. They said my heart is not getting a enough blood and oxg. to my heart.

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Maurethiahollins
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10 Replies
Bluebells profile image
Bluebells

Where do you live? There is a big difference between sickle cell and the trait! If you can, go to another doctor. Blood tests don't lie!

Maurethiahollins profile image
Maurethiahollins in reply to Bluebells

Louisville, Kentucky

Bluebells profile image
Bluebells in reply to Maurethiahollins

Are you seeing a hematology doctor? Only a specialist can give you a thorough exam,not a general doctor. My daughter has Sickle Cell and I have the trait. Go on line to find a specialist who treats SC disease. You would be surprised at the doctor's who don't know that much about Sickle Cell disease. We live in Baltimore so my doctors are all at Johns Hopkins. I am sure there are doctors in Kentucky who treat SC disease.

Maurethiahollins profile image
Maurethiahollins in reply to Bluebells

I see a cancer blood doctor. But I will look for one starting Monday morning. Thank you. Your daughter is in my prayers.

bluebug profile image
bluebug

You need to talk to the doctor not the assistant so see another doctor.

You also should go to an optometrist to confirm there is nothing wrong with your eyes and they cannot detect any diseases linked to them as some diseases cam actually be detected by the impact on your eyes.

Maurethiahollins profile image
Maurethiahollins in reply to bluebug

I go in two months to see my blood doctor. To talk things over.

bluebug profile image
bluebug in reply to Maurethiahollins

I strongly doubt your blood doctor (or haematologist) has examined your eyes and even if they had they won't know what they are looking for as it's not something they do every day, so if you have issues with your eyes so it is worth going to see an optometrist while waiting for this appointment.

This is actually a UK site so I can only speak to what happens in the UK.

Here optometrists work in opticians practices and are the people who examine your eyes not only to see if you are short or long sighted but to see if they show signs of disease.

If your eyes are yellow and there is an issue with blood vessels in your eyes they will see this, and legally if they cannot treat you themselves have to immediately refer you on either to an ophthalmologist or another doctor with their findings. Failure to do so is a criminal offence as recently shown here - telegraph.co.uk/news/2016/0...

Sickle cell disease suffers frequently have issues with blood vessels dying so evidence from another professional showing you have this will only help your cause.

Maurethiahollins profile image
Maurethiahollins in reply to bluebug

Thank you. Will make calls in the morning to get in to see my eye doctor.

Leora15Duarte profile image
Leora15Duarte

I'm also having similar troubles my vision has gotten worse since my mid-30s keeping employment is tough enough these days but add chronic pain and fatigue to the plate and you have a lot saying the same thing and no answers from doctors! my mother, sister,daughter & my five yr old son all the trait and one time or another has had one or more of these same pain problems..I've lost jobs bc of it

Maurethiahollins profile image
Maurethiahollins

I pray that God helps us all. We are going to keep pushing until somebody gets some answers. I'm here for you.

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