HopeSprings Posted May 7, 2013 Report Share Posted May 7, 2013 On DINET's homepage is a feature which allows you to have a brochure on POTS sent to the Doctor of your choice. I have in front of me a box of brochures and would love to get them out. Will you help? Is there a Doctor who you think could use an information pamphlet on POTS? Whether it be the well meaning Doctor who tried, but couldn't figure it out or the one who told you it was all in your head, let's get the information out there. It may take a while (depending on response), but each and every request will be honored. I'll post an update in the future to let you know how many Doctors we reached. Let's do this! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 7, 2013 Report Share Posted May 7, 2013 Hi Naomi, Thanks so much for volunteering for this very important DINET mission.I encourage all fellow members to jump in and participate in one of DINET's most important missions which is to inform/educate.Together we can help get the word out.You can see a sample of the brochure and e-mail information at this link: http://www.dinet.org/brochures.htmPlease provide the following information for your Physician...Name of PhysicianStreet AddressCityState/ProvinceCountry...and email that information to: DINETbrochures@gmail.comNaomi will take it from there. Thanks again Naomi!!! Quote Link to comment Share on other sites More sharing options...
Hope Posted May 7, 2013 Report Share Posted May 7, 2013 I'll get a list together! Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 7, 2013 Report Share Posted May 7, 2013 That is really great and helpful for all of us, but I really need to do that with my (case manager) who is not a Doctor but a RN, will that be OK? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 7, 2013 Report Share Posted May 7, 2013 Tachy, yes that is fine, case managers are health care providers too! They also usually deal with more difficult medical cases. It would be good to be on their radar. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted May 8, 2013 Report Share Posted May 8, 2013 Bravo!! My list will be coming soon......thank you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 8, 2013 Report Share Posted May 8, 2013 I'm going to send my list but I wanted to remind everyone to send names of dentists as well. It would be nice to find a few of them who are familiar with POTS. :-) Quote Link to comment Share on other sites More sharing options...
issie Posted May 8, 2013 Report Share Posted May 8, 2013 I've been giving some of the doc's here in Phoenix copies of the Changes video. They have all been real receptive. Today, saw my liver doc and she looked it up on her computer while we were sitting there talking. She was actually familiar with it and asked some pretty good questions. She thinks she has EDS herself. You never know who we may clue in that may be having issues themselves. Would be great to get more doctors in the know. I also took one to my endocrinologist last week. Also, my Lyme doc and primary got one. Let's get this info out there people. Getting it known is what is going to help us all. It won't be an unknown, rare illness any more. Has anyone taken either the brochure or the Changes video to Mayo doc's yet? There is also a help center in there that gives out brochures on illnesses - may be a good place to distribute the brochures. My dentist is very interested in learning more too. PM me and let me know if you want me to help in that area.Issie Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 8, 2013 Report Share Posted May 8, 2013 Hi Issie, I'm going to be contacting Dr. Goodman with a personal letter from me and Dinet. He and Dr. Levine have been working together and referring patients to each other. Dr. Levine will back from Medical leave at the end of June and got through his surgery and is just starting to feel better. Which is really wonderful news.That is a good idea about mayo's brochure area. I'll ask Rachel to send me more brochures for that.That is great you've been sharing the video. Quote Link to comment Share on other sites More sharing options...
issie Posted May 8, 2013 Report Share Posted May 8, 2013 Okay, glad you got that covered. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 8, 2013 Report Share Posted May 8, 2013 Hi,I wish if you send the Changes video link along with the brochure on POTS to my list of Doctors because it will be more effective, if they get it from you guys.Thanks. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 8, 2013 Report Share Posted May 8, 2013 Issie and tachy, please send those doctors and and your suggestions to naomi at the email account above. I'm just doing Dr. Goodman and my own doctors locally. I don't know if Naomi is sending a cover letter. I'm assuming it is just the brochure.I think if you want brochures to contact doctor's yourselves pm Rachel and see if she is okay with that. It is a good question?The brochure may be better received when given through a personal contact, but that is something you should run by Rachel first. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 8, 2013 Report Share Posted May 8, 2013 Before I give my list of the Dr.s, do I need a permission from them to give their names and infos to DINET? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 8, 2013 Report Share Posted May 8, 2013 No, we are just sending out an educational brochure to them like many organization's do. There is also no guarantee they will even read it when they get it. If you want to make sure your doctor reads the brochure, you may want to let them know that DINET is sending one their way.We would only need to screen them and get their permission if we decide they are someone we would like on DINET's physician's list. I will be working on updating that list, after I get some training on the webpage. Once I'm trained I will put out a request for doctor's for the list and will start the screening process with the new doctors. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 8, 2013 Report Share Posted May 8, 2013 This sounds great! I will get my list to you as soon as possible. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 8, 2013 Author Report Share Posted May 8, 2013 Since the psychiatrist is familiar with POTS - maybe that would be a good place to get info too. So, they know we don't need to see them - mainly. IssieLOL. Love that. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 8, 2013 Report Share Posted May 8, 2013 Thank you arizona girl. Quote Link to comment Share on other sites More sharing options...
abbyw Posted May 8, 2013 Report Share Posted May 8, 2013 I think the most important piece of research to send to doctors is the article that states the overlap between symptoms of anxiety and POTS and that POTs patients are experiencing physical symptoms but are not more prone to anxiety. I know that even the 2 "specialists" that I saw that had heard of POTs, "strongly implied" that it was psychological. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted May 8, 2013 Report Share Posted May 8, 2013 Sent my list! Thanks so much for all your hard work Naomi Quote Link to comment Share on other sites More sharing options...
bebe127 Posted May 8, 2013 Report Share Posted May 8, 2013 I do think it's a great thing to get the info out there. Like abby, I would like to see these dr.s realize that there is so much more to POTS (Dyautonomia) than just an increase in hr upon standing, with or without bp decrease as well as the whole physiological/psychological issues. The dr.s that I have seen have been familiar with the term POTS, but that is typically where it ends. They don't seem to be aware that it can be a dibilitating disorder. I've gotten responses from, "Eat more salt, drink more water and go live a normal life", to "You might seriously consider seeing a psychologist." Of course I've also gotten the ever popular, "This isn't life-threatening, many people live perfectly normal lives with this disorder." Sometimes they just don't seem to "get it" and that is the frustrating part.Again, thanks so much for raising awareness Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 9, 2013 Report Share Posted May 9, 2013 bebe127 & abbyw,I strongly agree with both of you. Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 9, 2013 Report Share Posted May 9, 2013 Thanks so much for taking on this project, Naomi! We greatly appreciate it!Rachel Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 9, 2013 Author Report Share Posted May 9, 2013 I agree with the points made too - having this illness confused with psychological problems is upsetting and delays diagnosis and even doctors who are familiar with POTS don't often understand how disabling it can be. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 9, 2013 Report Share Posted May 9, 2013 Naomi,Thank you so much for all you do,I greatly appreciate it!You are definitely right. Quote Link to comment Share on other sites More sharing options...
badhbt Posted May 9, 2013 Report Share Posted May 9, 2013 I wish the brochure talked about the anxiety symptoms being physical and psychological, or does it? That was my biggest hurdle with my Doctors. Quote Link to comment Share on other sites More sharing options...
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