Jump to content

Tips for newly diagnosed


Recommended Posts

Tips for newly diagnosed? My cousin was recently diagnosed with pots. I’ve been dealing with it for couple years. What advice should I give her? Is there anything you might have wanted to hear or any advice that may have helped in the early stage of your journey? Any tips that made management of a chronic condition easier?

Link to comment
Share on other sites

19 hours ago, akj said:

Having someone to talk to that is experiencing the same condition is one great huge help

Yeah I think introducing her to forums and channels that enable her to draw her own parallels and expand on her personal understanding of the condition could also be of great help when it comes to affirming her experiences with a diverse array of first-hand reports and substanciating it with medical literature. It's tough navigating that with a google search alone because initially you may not know which hubs are credible.

Link to comment
Share on other sites

My advice is to seek care from specialists familiar with and experienced in treating dysautonomia/POTS. And I’d also suggest seeking care from Large, highly ranked, University affiliated, big city Medical Centers.
Watch out for delays in care. My experience has been, wait 6 months to see specialist, they don’t have any ideas so they refer you on, another 6 months waiting. Repeat this 10 times and YEARS have gone by while you suffer! Fight for timely care and be strategic, schedule multiple appointments when possible to minimize waits. Stay positive, seek knowledge and reach out for support!

Best wishes and Good luck!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...