deeplyset Posted March 20, 2009 Report Share Posted March 20, 2009 I'm giving a speech on POTS this coming Tuesday and my goal is to bring awareness to our PLIGHT! I have heard it takes an average of 5-10 years to be diagnosed with POTS and I believe if doctors where more apt at identifying POTS and people had a greater understanding of the condition it would decreasing the suffering and helps us get treatment faster. I hope to gather stats for my speech as well as some interesting stories.I appreciate your help and if you have a suggestion on where to look for information please let me know!Rachel L. Blinn Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 20, 2009 Report Share Posted March 20, 2009 Hi,It took 30 years to get diagnosed. They thought it was all in my head. Dr Grubb was the first to diagnose me. He is from another country. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 20, 2009 Report Share Posted March 20, 2009 Although I first was diagnosed about 50 miles from my home, at Columbia Presbyterian, they did not elaborate or explain POTS was or how to live with it. It took another 4 years of struggle and finally a trip to the Mayo Clinic to finally get full and complete diagnosis and treatment plan.tearose Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 20, 2009 Report Share Posted March 20, 2009 I'm giving a speech on POTS this coming Tuesday and my goal is to bring awareness to our PLIGHT! I have heard it takes an average of 5-10 years to be diagnosed with POTS and I believe if doctors where more apt at identifying POTS and people had a greater understanding of the condition it would decreasing the suffering and helps us get treatment faster. I hope to gather stats for my speech as well as some interesting stories.I appreciate your help and if you have a suggestion on where to look for information please let me know!Rachel L. BlinnI don't know how thoroughly you have combed this site, but there are patient's stories and LISTS of articles in the resources section. Go to the main page (top left, under the big DINET) and poke around, everything you need is right there Quote Link to comment Share on other sites More sharing options...
jenwic Posted March 21, 2009 Report Share Posted March 21, 2009 I was diagnosed by an electrophysiologist in Cincinnati (50 mi. away) Quote Link to comment Share on other sites More sharing options...
MelissaCrystal Posted March 21, 2009 Report Share Posted March 21, 2009 I was lucky to be near Dr. Karen Friday at Stanford, a Dysautonomia Specialist. Before that, I suspected it was POTS for a long time from reading about it online. Took me forever to find a doc that knew anything about it and took me seriously enough to do the TTT. Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Report Share Posted March 21, 2009 I was diagnosed by a blood test that led to a TTT at Mayo. After I tested positive it led to many other diagnoses, and tests. It is amazing how just knowing what is wrong with you can help!Suzy Quote Link to comment Share on other sites More sharing options...
smiles Posted March 21, 2009 Report Share Posted March 21, 2009 it took 1 1/2 yrs for me to get my initial diagnosis. Then it took another year to get the rest of my auronomic disorders dx. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 21, 2009 Report Share Posted March 21, 2009 Like Tearose, I was diagnosed with POTS by my local EP cardio. But he didn't know what to do with me and stopped returning my calls. So I went to the Mayo Clinic in Rochester where I had a full workup and they found that the cause of my POTS was small fiber neuropathy. Quote Link to comment Share on other sites More sharing options...
flop Posted March 21, 2009 Report Share Posted March 21, 2009 I was diagnosed very quickly - within a few months of starting to have syncope. I think that I was lucky to be under the care of a local cardiologist who has an interest in POTS and has several other POTS patients. From just my story he said "I think you have POTS, you need a TTT". However treatment has been a slow process with a lot of waiting before being able to try different medications and treatments.Flop Quote Link to comment Share on other sites More sharing options...
Lizzegrl Posted March 22, 2009 Report Share Posted March 22, 2009 I was diagnosed by a local EP/Cardiologist, who referred me to Dr. Grubb for treatment. He happened to have gone to school with Dr. Grubb and knew he was doing wonderful work in the field, so he said I was very lucky to live so close to one of the foremost experts. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 23, 2009 Report Share Posted March 23, 2009 Good Luck! Let us know how it goes! It might be "fun" to bring a HR monitor and BP cuff and show them what happens to you compared to some of your classmates! Seeing it firsthand has opened the eyes of a few nurses for me. Quote Link to comment Share on other sites More sharing options...
shannon Posted March 26, 2009 Report Share Posted March 26, 2009 I'm giving a speech on POTS this coming Tuesday and my goal is to bring awareness to our PLIGHT! I have heard it takes an average of 5-10 years to be diagnosed with POTS and I believe if doctors where more apt at identifying POTS and people had a greater understanding of the condition it would decreasing the suffering and helps us get treatment faster. I hope to gather stats for my speech as well as some interesting stories.I appreciate your help and if you have a suggestion on where to look for information please let me know!Rachel L. BlinnGood for you, Rachel!! Way to raise awareness. Best of luck on the speech. Shannon Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 2, 2009 Report Share Posted April 2, 2009 OK Rachel, how did the presentation go???????????????How are you, what was their reaction? What was your reaction, speaking upright in front of them? Update please!!!!!!!! Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 3, 2009 Report Share Posted April 3, 2009 Oh dear, I realize I'm late.....but thought I'd share anyways. I was finally DXed after my teenage son was at Johns Hopkins. It was kind of like, "Oh, that's what that is.....Hope your presentation went well. Sorry I missed your deadline Julie Quote Link to comment Share on other sites More sharing options...
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