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Dragonfly

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About Dragonfly

  • Rank
    Newbie
  • Birthday July 13

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  • Gender
    Female
  • Location
    Macedon, NY

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  1. I am going to my first appointment with a neurologist that is a dysautonomia specialist to determine if I have POTS on July 10 and would love to have an idea of what I would need to know and/or ask at that appointment. I have been working with a cardiologist who has diagnosed me with syncope & collapse, mitral valve disorder, conduction disorder (unspec), cardiac dysrhythmia, and bradycardia. All have been recorded on my heart monitoring that I have been doing for the past six months. He believes after sending my information off to two electrical specialists (once of which picked up a "pre-heartbeat" as well) that I could have POTS. I currently have a 2.2 seconds with no heart beat one heart beat and then 2.2 seconds with no heart beat which is causing much difficulty. This is happening all day long with dizziness and I passed out at school in February. I also have long pauses which my Mother in law thought were epileptic in nature but yet they are not. It is just like the missed heartbeats are causing me to pause in time (if that makes any sense) - in delay and language. The meds the cardiologist has put me on have not worked up to this point - so I am currently on nothing. I have other symptoms (digestive, respiratory and back/leg) but the cardiac ones are the most difficult. Everything started two years ago after having the H1N1 vaccine in which I had severe reaction but no one can determine what caused what. I have been to another neurologist who tested me for MS and a whole host of other disease. I have had a full spinal and brain MRI along with conduction study. All the blood work for auto immune diseases are negative, I have been tested for COPD and had an airway challenge to determine lung deficiency. All negative --- Hopefully we are on the right track with the dysautonomia but this has been the first place I am finding lots of information. I am very grateful for that! I am feeling somewhat lost and cannot find any information on what types of questions I should be asking or what I should know before going to my appointment. Again, I am so thankful for this site and any ideas or comments would be welcomed!
  2. I am going to my first appointment to determine if I have POTS on July 10 and would love to have an idea of what I would need to know and/or ask at that appointment. I have been working with a cardiologist who has diagnosed me with syncope & collapse, mitral valve disorder, conduction disorder (unspec), cardiac dysrhythmia, and bradycardia. All have been recorded on my heart monitoring that I have been doing for the past six months. He believes I could have POTS and wants to check. I...

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