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Suspected SVT diagnosis, seeking advice

Heart Rhythm Conditions | Last Active: Mar 8 10:06pm | Replies (11)

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@janetbender

I had several symptoms and was diagnosed with POTS
Postural Orthostatic Tachycardia Syndrome does NOT present in labwork and is hard to diagnose. You diagnosis might be different.

I had very early Covid, then Ling Covid and lost most of my immune system.
Next diagnosed with ET, essential Thrombocytosis- chronic leukemia.
Even after my platelets were lowered from 1.1 million to 600,000 I felt terrible and was diagnosed with POTS.

The long term effects of Covid are different for everyone.
Try to find a long Covid center. Mine wasn’t helpful but it depends on the doctor - nice telehealth appt with the doc, but not helpful.

Ask to be put on a waitlist for canceled appts with the cardiologist.
Keep a list of ALL your symptoms to show your doc.

If you have a pulse ox or blood pressure cuff, test yourself sitting quietly and again when standing or walking a few minutes. With POTS my numbers fluctuated 30 points. After a year from diagnosis my doc still hasn’t found the right combo of medicine to normalize my pressure.

Don’t be discouraged - it takes a lot of effort to be diagnosed and get the care you need. Don’t give up! We’re here for you.

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Replies to "I had several symptoms and was diagnosed with POTS Postural Orthostatic Tachycardia Syndrome does NOT present..."

Thank you for the kind words. Leukemia, huh? I'm glad you're still with us. I've dodged COVID pretty well actually, only got it once about six years ago, back when Delta was still new and interesting. My pulse has always shot up about 40 points when I stand but I've never had the kind of symptoms I'm having- guess I might just have every issue under the sun all of a sudden. I'm trying my best to keep my head up and shrug off the feeling that everything is over. Your kind message helps me a lot. Thank you.