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I Am Officially Diagnosed


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ok where do I start.............. just like most here you struggled with any doctor believing you and most pass you off as crazy or doing this to ourselves and put you on anxiety medications.... I wish some how i could go back to all the docs. and nurses who did that to me and my family and give them a peice of my mind and hope that they will reconsider how they treat people.... doubt it will work!

anyways, I went to the physician list on this website and low and behold seen a doc. just 2 hours from me in kentucky who knows something about Pots........ and i made the appt. it was monday and i came out of there in tears with joy and peace.... he told me you are not crazy and most docs will tell you that but this is your autonomic system messing up.......... holy cow he didn't have to say anything else............ i was where i belong!!!

I have POTS................ all the other docs couldn't understand why my heart rate was 160 standing and my darn blood pressure was remaining the same.....

how about POTS and then they say no way your bp would go down......... bull malarky!!!

I just want to thank this site for the info and education to get me to a place where me and my family can relax and not deal with the stress of docs. saying i need a shrink....

i highly recommend any one close to bowling green ky to go to him......

love all of you!!!!!!!!!!!!


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hi lisabeth!

although it doesn?t immediately "cure" you, it does help to have a diagnosis. you are much more understood and people (friends, family and everyone who is interested) can get information about it (i'm sure you know by now michelle, how much this site is helping everyone. i couldn't resist mentioning the importancy of it, i'm sorry).

so, i am glad for you you are diagnosed. let's hope this doctor is able to help you feel better!!!

corina B)

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Hi Lisabeth,

Welcome to the club (mind you I think a lot of us would rather not have to be members, eh?).

As Corina said, being diagnosed doesn't actually help your symptoms, but having a validated diagnosis can help. For starters please don't let yourself think that you might be crazy anymore - docs said it to me so much that I began to think that they were right and maybe I was crazy. My GP made a rule for me that I am not allowed to listen/take seriously any doctor who thinks I'm crazy, I should only listen to the opinions of doctors that I value.

You'll still find lots of medical staff that don't know what POTS or dysautonomia is, but the good ones out there will make the effort to look it up and try to help you.

I hope that your new doctor can help you to find the right treatment combination to relieve your symptoms - keep us updated with your progress. I'm so glad that DINET has enabled you to find this doctor and get a correct diagnosis - educating us patients is the way forward and DINET plays such a huge part in the learning process.

Best wishes,


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I still feel the feelings I felt when I was first diagnosed with POTS, such a relief! And to find a community with people who know what you are going through and are there and supportive (for me it has been DYNA {the Dysautonomia Youth Network fo America - open to the world}) is amazing. My whole life has been changed and for the better.

I would definitely go back to your other doctors with information on POTS and Dysautonomia so that they can be better informed and hopefully will treat those who they may see in the future with similar symptoms better than you were treated. It's been awhile since I've looked around DINET, but I know that DYNA has TONS of information including individual brochures geared towards doctors, friends, family, etcetera to help inform. I do not see how any competent doctor would refuse higher knowledge, especially in an area they are not well-informed on. I say go for it.

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