A patient journey to diagnosis found by one of our members

[MaryF]

lovewhatmatters.com/i-woke-...

MaryF

[leakeadea]

Thank you for posting this but what a terrifying story!

Once again another patient who in truth was desperately unwell and in need of treatment, was accused of being "anxious"!

What is wrong with the medical profession nowadays, what happened to "first do no harm"?

They are "repeatedly doing harm" by dismissing their patients as being anxious or depressed!

[Lure2]

This is a tricky illness and as so few people have it (or are diagnosed with it) the Doctors very seldom have knowledge of it. As they do not understand it they say it must be anxiety (!). So we sometimes agree with them and think that we are "crazy" but we are not.

Important to find a Specialist who understands and have knowledge and we must learn as much as we can. I recognize a lot about what this patient talks about. The embolies that start in the heart or lung or as a DVT and go to our head as TIAs or mini-strokes. So very tiny but doing harm. Important to be properly anticoagulated as treatment.

Thank you Mary for this story! Please tell her that it meant a lot for us to read it and learn.

[HollyHeski Administrator]

So sad it got to this. Thank you for posting.

[lupus-support1 Administrator]

Thanks Mary. I have reposted at LUpus Patients Understanding & Support (LUPUS)!

[Wittycjt]

This is my story.... then I also had heart surgery followed by massive stroke, please be aware. Share this story with those you love.

[LindaMorrell]

I can relate to this so much it makes me cry...............

How strong a temperament you have to be to get through all of this.

My life has followed much of a similar path it is quite scary.

Well done for the persistence and well done for sharing your story.

My heart specialist said the leaky mitral valve has nothing to do with SLE or APS

How wrong is he. Yes I am due to see a different heart specialist.

I am not ready for surgery and hopefully never need to be. Though I am now researching robotic surgery as opposed to open heart - all due to the blood complications I have read about. I want to be armed with the knowledge that I have the best treatment possible.

in case I I ever need it. No good having a doctor from the dark ages.......

Good luck to all you lovely people. Please keep sharing your stories

[jetjetjet]

Very good story and my heart goes out to that young strong lady .