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Not Even Sure If I Have Dysautonomia Anymore...


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My echo showed 45% tricupsid valve insufficiency. It showed that the right side of my heart was weak and had regurgitation. They are having me do an MRI of my heart and now they are even looking into pulmonary hypertension. I'm really scared because that has awful mortality rates and I don't want that. I felt like I knew what was going on and if it really is all of that then who even knows if I have dysautonomia anymore. It would make my biggest symptoms have so much overlap that I might not even have it. I'm sort of freaking out atm.

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Don't worry about dysautonomia right now. I know this sounds scary but be thankful your doctors are getting the problem figured out. So many things over lap dysautonomia. Think positive because you do not need any added stress to your situation. Are you having the MRI today?

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I'm glad you're getting answers even though they may not be the ones you'd want. I agree with Rachel that you shouldn't worry about whether or not you have dysautonomia. Hopefully, after all your tests are done, your doctors will be able to come up with a good treatment plan. Sending good thoughts!

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I was wondering how your appointments went. So sorry that it's scary but hopefully they are on the track to getting you better. I know my fear is thinking that I "just" have dysautonomia but there is something else majorly wrong going on.

Sending hugs, prayers and well wishes to you!

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No I don't have the MRI today because they are a little backed up. She's suppose to call me back today with the date. Thank you guys. You're right. I don't even know why I'm worrying about whether or not I have dysautonomia right now. I kept saying my heart was fine and all of these doctor are stupid for doing all of these tests but apparently they were the smart ones after all. I can see why assuming everything is dysautonomia only is dangerous.

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I hate waiting for test results and not knowing, and being scared of the possibilities. That's the worst!

But, like everyone else said it's good that they're trying to get to the root of the problem.

Recently I had a cardiac workup and since a lot of the POTS symptoms are similar to pulmonary hypertension and because I was having so much chest pain, the cardiologist wanted to rule that out. I did a little reading about it and I agree it's scary, but, it is usually caused by other conditions and treating those help prognosis. So, even if it's that it's another step toward treatment and getting better.

I'm sorry you're going through this.

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How did your test go Robin? I agree it's scary to look things up. You guys are right that it's good the are looking into all of this. My MRI is the 25th so I'll have to patiently wait until then.

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That's next week. Your team is doing good to get you in that quick.

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Yes my team has been really trying to get things taken care of. My neurologist said to see him every 6 months now that my neurological symptoms are under control and wants the cardiologist and pulmonologist to handle the rest of things. I wonder what that means as far as whether I have dysautonomia...

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How did your test go Robin? I agree it's scary to look things up. You guys are right that it's good the are looking into all of this. My MRI is the 25th so I'll have to patiently wait until then.

My EKG and echo were normal, so PH is very unlikely. We talked about doing a stress test but since I have severe me/cfs and can't walk more than 50 steps at a time without getting weak, the cardiologist is not comfortable giving it to me and feels further testing isn't necessary. So for now my chest pains are vaguely labeled "POTS".

Hang in there and keep us posted!

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@lewis I hadn't but I will ty. @robin my ekg was okay and it was my echo that made them them think I could have it since it showed tricupsid insufficiency along with my symptoms. Ty I will def keep u guys informed. They forced me through a stress test to try to get my insurance to cover oxygen but I only lasted 3minutes before they forced me off.

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