Jump to content

at last! someone listened to me about POTS!


Recommended Posts

Thankyou SO much for all your help, everyone! If I hadn't accessed this board and spoken to the people I have through it (especially Hayley) then I never would have had the courage of my convictions and the strength to defy the Doctors in Scotland who told me I was having panic attacks....I've always known that this was physical in its origins, although it makes me feel frightened when it happens.

I also would never have heard about Professor Mathias in London or managed to get in touch with anyone who actually knows about POTS. I am just so thankful to the DINET for helping me in this way.

I saw an endocrinologist on Tuesday who told me I'm probably right about POTS, but he doesn't know much about it. I phoned Prof Mathias' secretary who put me through to a very kind nurse who really took the time with me and listened to me. She gave me lots of useful advice and said that I could get a referral to Prof Matthias through my GP.

So I printed out the pages on POTS and showed them to my GP. He was stunned. He said the evidence looks pretty irrefutable to him. He took me out of his consulting room and in to the waiting room where my mum was sitting and told her to be very rpoud of me because it looks aws if I have made my own diagnosis. So I'm seeing Professor Mathias at St Mary's in London in a couple of weeks. Hopefully now I can get fixed. Hurrah!

Do you know, even my physical symptoms are abating and subsiding now because I know I can see someone and get some help...I'm not nearly so weak and dizzy. So a great big THANKYOU and merry Christmas to everyone on here. Thankyou SO much for the best present I could have received--the possibility of getting my life back :rolleyes:


Link to comment
Share on other sites

Hi persephone,

I'm very glad for you that this helped you so much. I really hope that your appointment with the doctor in London will work out well. You've done a very good job to search the internet and found Dinet, you can be proud of yourself.

Wishing you a merry Christmas,


Link to comment
Share on other sites

That's super that your doctor read what you brought him about POTs and that he was humble and open minded enough to accept your research and commend you in front of your mom. I had to do the same thing with my doctor -- provide him with research I found on the internet and convince him that this is what I probably had. I was relieved when he accepted it and sent me for testing that confirmed it.

I will pray that you find more answers soon. I know it must be a huge relief to you and I'm sure it takes a lot of the stress off of your shoulders, which should also ease your POTS symptoms a little. Enjoy your holidays and relax! Good job! :rolleyes:

Link to comment
Share on other sites

Well done! How lucky you are to have a doctor who will actually accept that a patient might have answers that s/he is missing. Sounds like you are on the right track now. Good luck with your tests, and do let us know how things progress!

Link to comment
Share on other sites


that sounds like a wonderful christmas present! :)

what you did took a lot of courage and strength...and also, i am so glad that folks here were able to help you (sorry i wasn't one of them! i missed getting to welcome you here...so welcome! :))

i do hope that you will continue to keep us updated and let us know how things go. it is really wonderful that your doctor really listened to you and took action. AND that YOU were so persistant and such an advocate for your health.

as we say in america...YOU GO GIRL! :)


Link to comment
Share on other sites


I am so happy for you! You are a smart and brave soul with persistence and determination! Good for you!

We are all proud of you!

Good luck and don't give up...even if all of the answers don't come immediately....it's a tricky and sneaky disease.

Keep us posted!


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...