Remember I sent POTS info. the my area docs?

[LindaJoy]

Hi. Just wanted to share the phone message I got the other day from a doctor at the hospital where I was treated so terribly a few weeks ago by one of the ER doctors who said I had stress and not POTS. I had sent the hospital a whole packet of information on POTS.

Friday, May 13th, 3:37 p.m. Telephone Message

Yes, hi. Good afternoon. My name is Dr. Tucker. I?m the medical director of the emergency department at St. Rita?s Medical Center and this is a message for Ms. Linda Parsons. Ms. Parsons, I just wanted to take a moment to thank you for sending that information to the hospital. It?s a lot of information. I have not gone through it all but I did read one of the articles and I wanted to thank you. Very interesting?We do know about this syndrome but I generally think about it as only causing an actual syncopol event. And so this information you sent will make me a better doctor and I will pass this information on to my partners in the emergency department. But, I just wanted to thank you for taking the time and effort you did to get this information to us. This is a very intelligent approach and I admire what you did. So, I just wanted to take a minute to thank you. If you see (?) any reason to call me, please fee free to. My office number is ____. And, once again, thank you.

Wow. I tell you what, that message put a smile on my face! I'm so hoping they begin to take POTS more seriously around here. I got a letter from one of my old doctors who I sent information to, too, and he thanked me for the info and said he would use it in his practice to better help future patients. I'm sooooo glad. I am really fighting feelings of worthlessness right now since I've quit my job and can't really work or do much of anything. Now, I feel like I've done something to help people, and it's a good feeling.

Hope you're all having a great day.

LindaJoy

[Merrill]

THAT'S FANTASTIC!

GREAT WORK, LINDA!!!!

[geneva]

WOW! VERY impressive. good for you taking the high rode to try to educate. Now, next time you need to go to that hospital you can refer any unknowing doctors to call this guy!

[JLB]

Fantastic. You're a Godsend.

I'd like to send the same info to the neuro and the ER from last summer - what exactly did you send them?

[Ernie]

That's wonderful. Way to go girl. Your an inspiration.

Ernie

[EarthMother]

I'm doing my virtual happy dance for you.

This is terrific!

What wonderful validation.

What a big help for everyone else who walks through those ER doors.

Thank you so much for sharing.

EM

[Miriam Poorman-Knox]

And so it goes. Each one gives info where it is needed, and we help others. I am so glad this happenned. You must feel a bit safer now to go to that ER when needed. Those of us that are good at writing, should. I am so proud. I'm sending a wave to you Linda. Miriam

[LindaJoy]

Thanks, everyone. I did this for all of us! I'm so glad to be a part of this forum, I can't tell you. I've never felt so supported or cared about in my life. If anyting good has come of this condition, it's being here with all of you!

JLB, I sent the information, all of it, from the www.potsplace.com website, plus a few other articles: the patient written article found at http://home.att.net/~potsweb/POTS.html, a copy of my tilt table results, this forum's website address so they can peek in at real patients!, a copy of an article from Johns Hopkins Children's Center ("General Information Brochure on Orthostatic Intolerance and Its Treatment"--I think you can find this just by plugging in the title in your search bar), an article written by Dr. Grubb that the Cleveland Clinic sent to me--I can make a copy and send it to you. Actually, if someone can tell me how to post articles on this site, I can post it. It's a really, really good article.

Hope this helps. Let me know how else I can help.

Hugs to you all,

Linda

[corina]

Congratulations on the good work!!!!

Could you please send me the Dr Grubb-article please? That is, if you know how to do that? I'm sorry I can't help you with that, as I'm a dummy in these kind of things

Corina

[Guest Julia59]

Congratulations LindaJoy!

So glad to hear someone is getting through to some of the medical community, and also glad to see them to be willing to take Dysautonomia seriously----as is is very serious business.

My luck has not been so good. I've tried and tried by sending letters and information about dysautonomia just as you did---but no luck----

I'll still try, but I get an attitude at times---and this is when I usually take a break from it for a while, but I usually always go back.

Thanks for sharing your positive experience.

Julie :0)

[MomtoGiuliana]

That's great that you got a response and know that someone is taking the time to review the material. Sounds like a great doctor. I also sent information around to ALL the doctors who saw me in 2002/2003 and were clueless as to what was wrong. This was five different doctors, I believe. Not one of them ever responded at all--and I haven't seen any of them since (nor do I intend to, but I hope they did learn something!!). I sent them a handout prepared by Johns Hopkins describing the condition, symptoms and treatment possibilities, btw.

I think it is important that we all take the time to do this, even if it isn't always met with such an enthusiastic response.

Katherine

[Guest Mary from OH]

Hip Hip Hooray!!!!!!!

I am so proud of you Linda!!!! I can tell such a HUGE difference in your writing!!! All because you decided to ACT, instead of just giving in to the bureaucrats!!!

YOU GO GIRL!!!! Your actions may help so many people and your words spoke for many!! May your courage give others the power to do the same!!! Soon, we will have hospitals and ER's all over the US and other countries getting educated about POTS and other ANS syndromes!!!

GOOD FOR YOU!!!!

[MightyMouse]

Linda, if you send me all your links to everything, I can try to put together a "pinned" topic at the top of the forum with an info pack. I know that one of the volunteers is putting together packs to mail out to doctors, so I may need to check with Michelle first about what content we can and cannot put on the forum

(remember that many articles are copyrighted, so if they came from a "pay for service" site, or have a "do not copy w/o permission" notice anywhere on it, then we'd have some extra leg work to do before posting formally).

Nina

[Guest Mary from OH]

Nina-

If it were from one of those sources, I *think* you can either list the article as a citation or it as an abstract (of the article) without any problem. I would also provide the link where you got it from, that way people would know where to go to get it.

[MightyMouse]

Yes, Mary, one can list as a citation, with a brief abstract, and crosslink. Some of the documents may be available as free full text, depending on the source. I typically follow the APA style guide.

Nina

[Guest Mary from OH]

Nina,

I knew about for the free ones, I was just trying to help out for the ones that might be "tricky" or copyrighted or from a paid source that only one of us paid for. Or if we knew X had the article we could list, see X for this article...? I don't know. I was just trying to help. Maybe I'm not making much sense. I'm going on day 2 of a migraine and also have a fever today. So, maybe I'm not making much sense! LOL!