kellieb Posted March 16, 2011 Report Share Posted March 16, 2011 This is the Dean of Students here at the medical school. He called me tonight Said he will get me into the head card doctor. I told him i tried i couldnt get in in time. He said you dont worry about that i will get you right in. Then he said there is another Doctor who is doing research on this. he has 4 grants!!! I did delete my personal info. so it may look a bit funny --- On Tue, 3/15/11, kellieb > wrote:From: kellieb_Subject: Re: ResearchTo: "Churchill, Robert" <ChurchillR@health.missouri.edu>Date: Tuesday, March 15, 2011, 5:27 PMYes Sir i would like that very much. Please let me know how to go about it. My phone number is i deleted this part. or if you would prefer to go thru email that is fine aswell.Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----From: "Churchill, Robert" Date: Tue, Mar 15, 2011 6:44 pmSubject: ResearchTo: "Kellie B" Yes to both questions. We do research in this and we have a cardiologist who knows about and treats this condition. I can facilitate you being seen here if you like.Sent from my iPhoneOn Mar 15, 2011, at 2:54 PM, "Kellie B" > wrote:Dr Churchill,I was recently diagnosed with Hyperadrenic Postural Orthostatic Tachycardia Syndrome. I'ma 32 year old single mother of one 6 year old. With a past history of Pseudotumor cerebri. This allstarted with the pregnancy. I have 2 reasons for emailing. The main reason is research. Notmany doctors know about this disease. Or what all it consist of. Its very complicated. especiallythe Hyperadrenic Version. Do you by chance have a research program related to anything about this?If so i would LOVE to be involved. In one way or another. My Second reason for emailing is actualtreatment. I recently started seeing Dr Pierce from Missouri Heart Group. He specializes in POTSBut not the hyperdrenic version. Do you know of any Dr's close to columbia? Time is criticalfor me. As i will lose my insurance within the next few weeks. My FMLA is about out. Thank youfor your time.Kellie Beran Quote Link to comment Share on other sites More sharing options...
lieze Posted March 16, 2011 Report Share Posted March 16, 2011 Awesome--let us know how it goes for you. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted March 16, 2011 Report Share Posted March 16, 2011 So happy that you got a quick response! Hope it gives you the help you need!Sandy Quote Link to comment Share on other sites More sharing options...
issie Posted March 16, 2011 Report Share Posted March 16, 2011 diagnosed with Hyperadrenic Postural Orthostatic Tachycardia Syndrome. complicated. especiallythe Hyperadrenic Version. Yes it is and for us hyperadrenic POTS people any info we can get would be so gladly appreciated. Quote Link to comment Share on other sites More sharing options...
kellieb Posted March 16, 2011 Author Report Share Posted March 16, 2011 Yes is very exciting yet nervous. I also did research for the peusdotumor. Which is also kinda rare. The Administrator already sent me a email this morning wanting all my contact info. Things seem to be moving pretty quickly. Anything new i find out etc i will be glad to post as it comes in. I know it sounds weird. But i think we learn more and more from eachother each day. IT comes with so many things. I'f doctors were to look at this forum i think they would learn alot. Just from actually listening to the patients. I guess i should be thankful that im a very stubborn women. I will not take not for a answer. Even if they find out just one new thing from me. It would all be worth it. Quote Link to comment Share on other sites More sharing options...
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