The Mayo Clinic And Pots

[friday7]

I'm been looking for reliable info on POTS to share with my new doctor and i know a lot of people get diagnosed at the Mayo Clinic and I also know that since it is well known that will hold more weight to have information from that site .

The only problem I keep running into is when you look for info on POTS and the Mayo Clinic it always seems to come up about teenagers and children. If you didn't know any better you might assume it is a childhood disease.

It's very frustrating because we know this is not so.

Does anyone else feel their slant towards children makes it seem like a childhood disease..Is there anywhere that has info from the Mayo clinic that speaks about POTS in a general way?

[sisblostg]

I have been treated at the Mayo as well as other major hospitals and I think in general with POTS and genetic conditions they are trying to dx patients earlier. They don't want to hear that you are now 25, 35, 45 and had 20+ years ago issues and been misdiagnosised and labeled without the right dx. When I got dx they asked about my kids. They asked to see pictures(even noted on my file alot about my kids and any health issues they had). My son had an odd problem during a PE class and a specilaist fly to our city and said she has dx over 500 kids with POTS or IO in the last few years and 10-15 years ago this wasn't even on the radar. What I found almost shocking was it took me years to get dx. My son went to the night time peds clinic when he was sick and my husband went with him. The night dr did not know me. By the time I got there they were testing him for OI(simple in office tilt test). The night dr had no clue of family history. I really think they are being proactive these days. I was tempted to ask if the pedtrician would be my primary care dr instead of my old stuck in his ways dr!

I don't think any generic POTS packet or brochure the Mayo clinic gave me was great. The custom plan they made for me was what helped me know what I should ask for and try once I got home. I have had a hard time describing what is happening in my body to my kids teacher, or neighbors that have little medical knowledge. I found an article written about a study done in Mexico and central America. It was worded in non-medical talk, and gave the most real life examples in plain english (like how it is hard to wait in line at the grocery store, I remembering reading that part & said thats me). It has helped the normal neighbor or friend try and understand me. I can try and find it if you would like, but it is more understanding the patient then recommended treatments. As for information to give your dr I haven't found anything my dr wanted to read except the Mayo plan for me. Most articles are too long and most doctors(mine at least) dont even want to spend an evening over a patient that makes them little profit.

[ramakentesh]

I would look for published material from Vanderbilt.

[ramakentesh]

I would look for published material from Vanderbilt.

[Katybug]

Friday,

I don't know that it's specific to Mayo, but my PCP, who has been my doc through this whole thing, flat out said to me when my cardio dx'ed POTS, that he was aware of POTS but never considered it as a differential dx for me because he thought it was strictly a childhood /teenage syndrome. His wife is a pediatrician so that's how he was familiar. Now that he knows that's not the case, he has sent two other adults for testing with cardios and both have POTS. So I do think some of the literature can be misleading but I guess my silver lining is that I feel like we can help pave the way for others so they can be dx'ed and treated faster.