AJVDK Posted September 18, 2005 Report Share Posted September 18, 2005 Guess what my referal finally when though!!! I am going to to Cleveland! I am very happy yo me going but......... worried. I worried that what the outcome is going to be as this seems like a last chance kind of thing! After going from doctor to doctor telling me i have every from heart problrms, to having a pacemaker put, to be told it was in my head, to derpression, and the list goes on. Then a fem months ago telling me I have POTS. I turly beleive POTS is the 1st thing that really makes since, and meets all the things that seen to be going on, but am worried I will go out there and say, yes you have POTS like the other doctor, and say there no real treatment that will work for you, or come up with a hole new thing, I know that sounds dumb, but after 5 1/2 years of going thouhg this I have found out any thing is possable. At the same point I am really happy about going and hope they can find the right treatment for me! I know this my sound dumb I am just scared. So I am off to Cleveland for test. My 1st appointment is on October 18. The first test I have is going to be a tilt table test. ( I had one about 3 years ago, and i was the worst thing I got sick, and passed out, I hope that doesn't happen again, plus I not sure it it will all work the same now as I have a pacemaker?) Anyways thought I would give you all an undate of what was going on! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted September 18, 2005 Report Share Posted September 18, 2005 WOW that is great that you got in to the cleveland clinic.. to be seen..I really hope tha tthey can help you and offer you some kind of treatment to help you feel better..Its kind of bitter sweet finding out that you have pots.. and then finding it hard to find a good doc to treat you.. and then the process of having to find that right treatment combo that works for you..I know what you mean about the TTT (til table test) I have had 4 of them done.. and the one that I had done in october 2004.. was the worst of all 4.. I got so sick allmost instantly when they stood me up..I came very close to passing out.. but did not loose total consciousness..I wish you well and hope that you get some answers and help at the cleveland clinic!! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 18, 2005 Report Share Posted September 18, 2005 I will be sending thoughts for you to get your questions answered and to find a combination of medications and/or other treatments that work for you. Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 18, 2005 Report Share Posted September 18, 2005 I hope it goes well for you, I will keep you in my positive thought box...morgan Quote Link to comment Share on other sites More sharing options...
AJVDK Posted September 19, 2005 Author Report Share Posted September 19, 2005 Thank you! I am looking forward to just finding the right treatment, and a doctor that turly understand POTS!Thanks again,Amy Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted September 19, 2005 Report Share Posted September 19, 2005 Thats great! Let us know what you learn! Quote Link to comment Share on other sites More sharing options...
Kimberley Posted September 19, 2005 Report Share Posted September 19, 2005 Guess what my referal finally when though!!! I am going to to Cleveland! I am very happy yo me going but......... worried. I worried that what the outcome is going to be as this seems like a last chance kind of thing! After going from doctor to doctor telling me i have every from heart problrms, to having a pacemaker put, to be told it was in my head, to derpression, and the list goes on. Then a fem months ago telling me I have POTS. I turly beleive POTS is the 1st thing that really makes since, and meets all the things that seen to be going on, but am worried I will go out there and say, yes you have POTS like the other doctor, and say there no real treatment that will work for you, or come up with a hole new thing, I know that sounds dumb, but after 5 1/2 years of going thouhg this I have found out any thing is possable. At the same point I am really happy about going and hope they can find the right treatment for me! I know this my sound dumb I am just scared. So I am off to Cleveland for test. My 1st appointment is on October 18. The first test I have is going to be a tilt table test. ( I had one about 3 years ago, and i was the worst thing I got sick, and passed out, I hope that doesn't happen again, plus I not sure it it will all work the same now as I have a pacemaker?) Anyways thought I would give you all an undate of what was going on!<{POST_SNAPBACK}> Quote Link to comment Share on other sites More sharing options...
tracy Posted September 19, 2005 Report Share Posted September 19, 2005 That is great news. I hope all goes well for you and you can find some answers. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 20, 2005 Report Share Posted September 20, 2005 congrats:-) i hope hope hope that you can get some answers & help. if you'd like shoot me an email or PM when the time gets closer & maybe i'll be able to stop by & keep you company at some point. i'm just down the street from the hospital.... melissa Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 20, 2005 Report Share Posted September 20, 2005 I am so happy for you that you were able to get in. I send my best wishes for some answers and relief to your symptoms Please keep us posted on your progress and your experience there. Quote Link to comment Share on other sites More sharing options...
AJVDK Posted September 21, 2005 Author Report Share Posted September 21, 2005 sunfish,thanks, that would be great! I am flying in on the 17th and will be there though the 23rd. My husband and son are coming too...... My son's 4th b-day is on the 22nd so I wanted to bring him with me! We wants to go to the zoo!Let me know it would be nice to meet someone else in person that has POTS! Quote Link to comment Share on other sites More sharing options...
Rita Posted September 21, 2005 Report Share Posted September 21, 2005 It is very normal for us to wish that there was a cure. I know that no one every wants to hear they have pots , but at least they have a diagnoses that makes sense and they can help your symptoms more so than without a diagnosis. Good luck I hope everything goes GREAT FOR YOU!!!!! Rita s Quote Link to comment Share on other sites More sharing options...
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