Struggling with Undiagnosed Symptoms for 3 Years

Good evening guys👋🏽. I’m approaching 3 yrs of seeing specialists & multiple hospital visits. My cardiologist told me last year that I have symptoms of pots but will not diagnose me. She insists that I am just out of shape. Prior to my symptoms, I was working out/ strength training no less than 3x’s a week. I haven’t been able to work consistently or support myself. I’m barely getting through the day. In the beginning of 2021, I was put on propranolol 3x’s a day but the side effects were not worth it. I had constant migraines, hives, and could not stay awake. Now my doctor prescribed be metoprolol and I just find it concerning that I have no diagnosis but drs keep gaslighting me and prescribing meds with no diagnosis. My health has completely stopped my life. I had to stop my college classes, work, love life, etc. If anyone has any suggestions or encouragement that would be really great right now. I’m trying to stay encouraged but at this point I’m out of resources and it feels like I’m out of faith.

Your answer

FS_cookielove

1y ago

I'd ask for a HUTT test (helps to diagnose pots) and if she says no find a new cardiologist

Trulyloved

1y ago

Thank you! I’ve had a tilt table test. My cardiologist who administered the test said results came back negative. I sent the same test results to the Cleveland clinic and they said my result was positive because I passed out. Safe to safe I’ll be moving forward with Cleveland clinic. It’ll be harder to travel to but I just need answers/ solutions. Thanks again

Zemi

1y ago

I was told I was deconditioned or dehydrated. I humored them by doing everything they wanted to try and prove they were right. Well after no improvement, it was obvious they were wrong and I got my POTS diagnosis

Trulyloved

1y ago

Geesh. That’s crazy. I’ve done the same. Worked out again consistently, increased my water intake, drink gatorades & lick salt… still no improvement. Just time passing of me feeling like I’m fighting for my life majority of the day. Thank you for sharing

Trulyloved

1y ago

Also, does anyone experience constant shortness of breath or trouble breathing?

Juno2191

1y ago

I do, on exertion specifically

TunaGoon

1y ago

Sounds like pots or another kind of dysautonomia it's odd she won't diagnose you. Definitely go see someone else. In the meantime you could try extended release propranolol if you're willing to try it again. Then its just once a day. I had similar problems at the beginning but changing to XR made it all go away. You may want to check out MCAS and see if that sounds like you. Sometimes gentle cardio can help. My lifesaver has been salt stick capsules (without caffeine) and cutting out caffeine. Good luck!

Juno2191

1y ago

if cardiology refuses to diagnose (as it did for me), it may be worth looking for a POTS specialist. I couldn't get diagnosed until I went to a dysautonomia specialist because all of my other docs said "not my problem" or "it's in your head"

Trulyloved

1y ago

Thank you! I will mention it at my next appointment & I’ll look up MCAS tonight. Thanks again! I appreciate it.

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