eli12 Posted January 24, 2017 Report Share Posted January 24, 2017 Hi all. I'm new to this forum. Quote Link to comment Share on other sites More sharing options...
seaboardbc Posted January 25, 2017 Report Share Posted January 25, 2017 Welcome. This is a great forum. I've been. member for several years. The other members have been very helpful. Post your questions or concerns and I am sure someone will have some feedback for you. Quote Link to comment Share on other sites More sharing options...
corina Posted January 25, 2017 Report Share Posted January 25, 2017 Hi eli12, welcome to DINET! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 25, 2017 Report Share Posted January 25, 2017 Welcome to the forum! Quote Link to comment Share on other sites More sharing options...
M J Posted January 25, 2017 Report Share Posted January 25, 2017 Hello I am also new to this diagnosis and this forum. I have questions and can use any info anyone can offer as I am really frustrated. After a few years of CSF leaking and patches, I was diagnosed with Vasovagal syncope. I don't fit into any of the more prevalent diagnoses but my symptoms are closer to a Neurally Mediated Syncope. There are no physicians in the area who know much about this and none are certified in the whole state of NC. Hard to believe with Duke and UNC right in my neighborhood! I had a Tilt-table test with a cardiologist who has seen a few cases, got my diagnosis, was given a prescription for Midodrine and rehab, and a follow-up appointment in ONE YEAR (the soonest she had available) with her. Say what? Any input for physicians in the area would be greatly appreciated. I requested a consult with Vanderbilt and have not received a reply but not crazy about having to travel so far. The medication made me so confused I stopped taking it (I let my neurologist know). The compression stockings are horrible to wear and really pricey. I went to a few rehab classes but they are for POTS and I was the only one there so no one to talk to about this. I'm drinking 4 l of water a day and eating so much salt I feel I should hide from deer (when I'm not in the bathroom of course)! I had to take an unpaid leave of absence from work (desk job) as I cannot sit longer than 30min at a time without symptoms. Any information or suggestions would be greatly appreciated as would any reply from someone in/near my area Raleigh/Durham. Best to everyone suffering with this odd affliction. MJ Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 25, 2017 Report Share Posted January 25, 2017 Hi MJ Welcome to the forum! Our physician list might be helpful if you have not looked at it already: http://www.dinet.org/physicians/ You might also try posting a separate topic with your question as more members may see it that way. Quote Link to comment Share on other sites More sharing options...
corina Posted January 26, 2017 Report Share Posted January 26, 2017 Welcome to you too MJ! I can't sit for long either, it helps me to stand up and walk around a little and then get seated again. Just a thought of course! Quote Link to comment Share on other sites More sharing options...
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