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About lexcyn

  • Birthday 11/16/1976

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  1. Scared I might have MSA.. :(

  2. I was also diagnosed with Autonomic Nervous System Disorder. After my TTT in October of 2011 I kept having problems with passing out and also other things started happening like problems keeping my heart rate up and lots of gastrointestinal problems, and many more little things. After a ER visit and a loop recorder implantation my EP realized I had problems with my ANS in December of 2012. I was already on Midodrine which does help. He also put me on a nose spray to help retain water. All I can say is get ready for lots of different treatments. Since there is not a cure I was told they could only treat the symptoms when they come up. The best thing I did was to make a list of all my doctors, medicines,surgeries and diagnosises. Try to keep them with you and always take them to ER.You wouldn't believe how much that speeds things up. Plus, I now have a problem with my memory so it helps there. If you ever need to talk about our have questions just let me know. Good Luck and try to always think positive!
  3. I was dx with GERD in 2010 it had been going on for years but I was always on Nexium which kept everything healed. During that time I also had a lot of migraines which I dont have now. In Nov of 2010 they did a nisen fuduplication to stop the GERD. Almost a year later I was diagnosed with POTS. The doctors dont know if the surgry made my POTS come on more or not. I still have some GERD problems but not nearly as bad as before, although I dont see a change with my GERD when my POTS acts up but I also dont go very many days/hrs without my POTS acting up.
  4. that is exactly how I feel most everyday from morning to night. I dont get the pooling in legs but my gut pays the price. It is worse after eating but by then digestion begins and I get extremly tired and it is nap time for me.
  5. I get this too mine gets really bad if it starts in the abdomin. I usually get it once a day and it scares to crap out of me. sometimes I will get chest pain with it too and all I want to do is cry. But the doctor is not paying any attention to this and I really would like to know what it is. I would rather pass out then have this happen because it gets so bad in my face sometimes I cant even talk.
  6. where can i get info on this? i have trying to find a study that will accept me for awhile
  7. I just had an incidence where I was taking my afternoon nap and woke with extreme pin in my chest. I felt very nauseas, and it hurt so bad. My BP was 140/80 hr 54. The heart rate is normal for me but not the bp. I sat up and has slowly went down now it is 124/76 hr 47 which is more normal for me. I still am a little nauseas and even more tired now then when I layed down to take my nap. And I still have some chest pains. I have woke before with slight chest pains but it is cause my heart rate goes to low. has this ever happened to anyone else?
  8. This really has me wondering especially about the not sweating thing. I barely sweat at all, I can be in the sun where everyone else has sweat rolling off them and I am chilled with goosebumps. The only place I tend to sweat is on my back a little and behind my knees, is this normal? I have to see a new doc soon so I really appreciate you bringing this up. I pray that you feel better and that you get a doctor that cares more and doesnt just want to give in. Good Luck! Cynthia
  9. I thought this study was really interesting, gives you a lot to think about and ask about. Thanks so much for putting this up for all of us. Cynthia
  10. seems very interesting but now the challenge is to get doctors to listen
  11. I have been seeing Dr. Gilman at U of M. We are at a point where he doesnt know really what else to do. I am trying to get down to Cleveland Clinic in Ohio. But before I can do that my insurance provider wants me to see a cardiologist at Detroit Medical Center but I dont know anything about their doctors. Can someone give me some advice on what doctors are good with our conditions and which are not so I can have my PCP can refer me to the right doctor. Any help will be much appreciated. Thanks everyone! Cynthia
  12. Lynne, I have the same problems and it is horrible. My nuero at University of Michigan, and neither can anyone else. My PCP tried baclofin to help but that made me end up in the hospital. So now he put me on valium 5 mg but it wasnt stopping them. I tried to take 10 mg and that helped but knocked me out. They were gone when I woke up but getting them everyday tires me out so much. I am trying to get into Clevland clinic but my insurance is making me see a doctor in Detroit. Does anyone know of any good cardiologist that work for Detroit Medical Center? I have see one there before my insurance will pay for Cleveland. Thanks and feel better everyone lets prau for more good days than bad.
  13. Jangle, could there be anything else that could be affecting my memory? I know when I start getting tired I also start to slur all my words. I just have a feeling something else might be going but not sure where to start looking.
  14. I was diagnosed with pots in September last year. I have all the normal symptoms of pots, intestinal problems, brain fog, dizzness, presynscope, extreme fatigue, etc...I have noticed that that my memory seems to get worse and worse as the time goes by. I don't know if this is because of pots or not or if there is something else going on. My doctor said not to worry, but I was at my daughters doctors appointment the other day and I couldn't even remember some of the basic questions. I really need some I site on this. Not being able to remember things make me feel is incompetinte. Should I expect the memory to get worse? I know since that appointment my depression has hit an all time high. It makes me feel useless and trapped. Can anyone help?
  15. I was kicked in the head by a soccer ball, and it brought everything to the forefront.
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