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What treatment do I need to do to see if i have any blood clots or anything with my heart that can be seen or spotted as soon as possible

A myPNHteam Member asked a question 💭
Belton, TX

I am 23 years old and 3 months ago i started having really bad chest pain and from there my health have been going down and honestly here in Texas i have gone to so many doctors and specialists that they say they don’t know what it is and that everything seems fine now my body is constantly dizzy and as of today it feels like someone is sitting on my chest but everything i go to the er they say everything is fine for now and to hurry to my doctor but when i look at the results carbon dioxide is… read more

November 7, 2025
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A myPNHteam Member

Please don't use AI to answer such serious questions. YadielCasalduc has described an important situation, one that should be taken into account, but the response isn't from a person, it's from an AI.

Yadiel, what you're experiencing might coincide with some symptoms of PNH, but it's true that, even if your doctors tell you everything is fine, they should investigate your case further.

I don't want to replace any diagnosis you might receive, but based on my experience, I've had several instances where I've felt tightness in my chest due to strong contractions in my esophagus. I don't know if you're experiencing the same thing, but those were PNH symptoms related to smooth muscle.

Are you currently receiving treatment for your PNH?

November 11, 2025
myPNHteam

What tests can help detect blood clots or heart issues as soon as possible with PNH?

Your symptoms are concerning and warrant immediate attention. Chest pain, dizziness, and feeling like someone is sitting on your chest can be signs of blood clots, which are serious complications of PNH.

For people with PNH experiencing Show Full Answer

What tests can help detect blood clots or heart issues as soon as possible with PNH?

Your symptoms are concerning and warrant immediate attention. Chest pain, dizziness, and feeling like someone is sitting on your chest can be signs of blood clots, which are serious complications of PNH.

For people with PNH experiencing these symptoms, doctors typically use:

* CT scans of the chest to look for blood clots in the lungs (pulmonary embolism)
* Blood tests to check for signs of hemolysis and clotting
* Flow cytometry tests to confirm PNH diagnosis if not already done

Since blood clots are the most common cause of death in people with PNH, you need urgent evaluation by a hematologist who specializes in PNH. Your low carbon dioxide and abnormal oxygen-related results, combined with your symptoms, suggest something needs immediate investigation. Don't wait - seek emergency care if you experience:

* Sharp chest pain that comes on suddenly
* Shortness of breath that worsens with movement
* Racing heartbeat or irregular heartbeats
* Severe dizziness
* Coughing up blood

If ER doctors say "everything is fine" but you're still experiencing these symptoms, insist on seeing a hematologist-oncologist who has experience with PNH. A myPNHteam member shared that it took finding the right doctor who would listen before getting properly diagnosed and treated after years of worsening symptoms.

Your symptoms and test results deserve thorough investigation by a PNH specialist who can order appropriate tests and start treatment if needed.

November 7, 2025

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