metoo Posted April 20, 2004 Report Share Posted April 20, 2004 I am leaving tomorrow morning to go to Mayo Clinic.I am so nervous and upset,it is making all my symptoms worse.I have 3 wonderful kids who are so upset that I am going away and it is making it so hard for me to leave them.My husband is staying with them and that helps but they are used to Mom always being here for them.I just hope that this is finally going to be the end of my long road of unexplained symptoms and misdiagnoses.I have been through quite a few of them in the last 18 years! The Mayo Drs have already looked at my med records and came up with dysautonomia.I am hoping I will be relieved at finally knowing what it is but to be honest,from all I have read I really don't want it! I guess I was hoping that when ever they finally put a name on it I would be able to take a magic pill and it would all go away.Well,I will quit whining.Everyone take care of yourselves.Thanks for listening,Melanie Quote Link to comment Share on other sites More sharing options...
purplefocus Posted April 20, 2004 Report Share Posted April 20, 2004 Melanie, I understand wanting to know what has been going on with your body and I also understand wanting to have a magical pill. I know the most of us that are touched by dysautonomia are debilitated but just remember we are not being giving a life sentence of having "incurable cancer". Even though we suffer we will still be here to see the smile on our childrens faces. I understand the pity, have myself a pity party often but we do have to know that even with dysautonomia we can still stop and smell the roses. Paige Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 20, 2004 Report Share Posted April 20, 2004 There may be no magic pill, but appropriate diagnosis and treatment will do much to help you recover. I know how hard it is to go through all of this and the guilt you feel about the burden on your children and husband. This trip you are taking is so worth it. Best wishes! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 21, 2004 Report Share Posted April 21, 2004 Melanie,I wish you the best on your trip to the Mayo. I hope that your appointment is with Dr. Low. I found him very caring, very reassuring, and very comforting. He explains everything really well and emphasizes how POTs is not an anxiety problem.I travelled twice from the Washington DC area to see Dr. Low. While he has no magic bullet, he does offer some possibilities suited to your condition. Moreover, while at the Mayo, he can refer you to other specialists in other disciplines for evaluation.Enjoy Rochester! I hope that you are staying at the Kaylor (spelling). They have real good rates and is very close to the Mayo--through an underground walkway.Wear comfortable shoes. Bring plenty of reading material. Enjoy the marvels of the Mayo.Let us all know how you fare. We are rooting for you and hoping that the Mayo doctors can offer you some relief.Know that POTs is not a life sentence. We just need to take it real easy, listen to our bodies, and enjoy our family and friends.Like others, despite POTS, I still live a reasonable life. I travel, with lots of rest time, and work. I don't worry about maintaining a clean house. I spend my energy on better things. goldicedance - Lois Quote Link to comment Share on other sites More sharing options...
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