I know that feeling when you know straight away that a doctor is going to be no help and you might as well have set fire to 60 bucks
I was wondering about your echocardiogram results and how the right side pressures were.... thinking pulmonary hypertension or embolus, but I guess they have ruled that out. I wonder if you could ask to be referred to a specialist i.e cardiologist? I have looked after patients with heart disease who present with similar symptoms, especially women who have been fobbed off for some time prior to hospital admission. I don't mean to alarm you, but you know something is not right. I'd keep pushing for answers x
Im guessing if there was anything abnormal in the echocardiogrami would have had a phone call from my dr to come in by now im thought it might be more related to Ehlers Danlos I was wondering if a rhemuatologist might be able to rule that out at least
Hugs. Just wanted to let you know I've gone through a very similar journey and really understand your struggle though thankfully I got sick as a child so didn't have to worry about work and looking after the kids.
I had unexplained arrhythmias chest pain dizziness and exhaustion for about 10 years before they finally worked out the correct diagnosis which for me was postural orthostatic tachycardia syndrome. Turned out it was only discovered shortly before I was diagnosed and it's only recently they've worked out any treatments that help. I saw so many doctors and had so many tests. Many doctors decided I was making it all up or that I was nuts because they couldn't see what the problem was. Almost all of them just gave up.
I really hope you get a good diagnosis soon and they can treat you! Best wishes
You may want to look into dysautonomia. What I have is one kind and I think ehlers danlos is connected with dysautonomia so maybe it will help with finding the right tests.
Re: VENT!!!
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