From A (Syndrome) To A (Disease)?

[tachyfor50years]

Hi everyone,

I hope one day POT will become a recognized condition that when we go to doctors offices, we will see brochures on Dysautonomia, like all the other conditions.

Just a wish!

[puppylove]

Me too. I don't know if it's becoming more common or maybe we are doing a good job at spreading the word, but it seems like more people are being diagnosed. There are at least three kids in my highschool who have POTS.

[ramakentesh]

It will. Renaming would be a good start I think.

[corina]

I asked my gp (who does my injections every three weeks) lately if he had seen anyone else with these symptoms which of course he hadn't. My cardio lately told me that he had been thinking of me (while I hadn't been seeing him for about 5 years) when he got a patient with dysautonomia symptoms. I was glad that he was able to recognize! In my case, over 10 years ago my cardio was the first to think of dysautonomia, I was so lucky my gp referred me to him!!!!

Overall my neuro manages my care with my family doctor (who has learned a lot over the years!), I can usually do without my cardio.

I share your wish Tachy though I'm afraid that would mean more and more people would be affected by it.

[tachyfor50years]

Corina,

My wish is not (and never will be) about more people geting our condition, it is only about publicity and awareness for the current Dysautonomia patients.

I am glad that you have a thoughtful cardio.

[RunningWild]

Weirder for me: I went to see my gynocologist for a yearly exam yesterday and told him a lot has gone on since i last saw him. He said "not really. I have had 3 people with POTS come in this past month. Its no big deal"

Kind of like a slap in the face.

[McBlonde]

Even worse.... my FP whom I've seen for 10 years had never heard of POTS and didn't know how to treat. I asked him about IV fluids and PT rehab combination.... He said he didn't have a clue and maybe I should see a cardiologist... When he said he'd never heard of it, my first thought was to ask him if he'd ever heard of Google (thought, but didn't say! )

[tachyfor50years]

McBlonde,

You made me sad and laugh at the same time!

Sad, because you reminded me of my PCP and and most of my other doctors.

Funny, when you were about to ask him about Google!

[issie]

Well, I'm spreading the NEWS. I mean just about every tech. I'm dealing with in the hospitals and labs and doctors office are getting at least some education about POTS. I tell them we are trying to get the word out about it, cause there are probably more people who have the wrong DX and don't know what's wrong with them. People are finding it fascinating and say they are going to go home and research it. We will get it known and then maybe more docs will take a look into it.

Issie

[corina]

I know Tachy it's something none of us would wish. It's just that medical conditions get more attention when more people are affected by it. I'm glad that it seems to take patients less time to get a diagnoses than about 10 years ago.