Faintinggoat Posted April 19, 2014 Report Share Posted April 19, 2014 Soo, I saw a new cardiologist in the area yesterday. If ever there was a doctors appointment to cry over, it was that appointment. First off, I was told my symptoms were slightly abnormal, that the world spinning sensation was abnormal with POTS, and "amnesia" with the syncope is almost never seen in POTS. Maybe I'm just over sensitive to these things, but I thought the syncope amnesia was my brain fog. He told me that he would have been more likely to think that I had seizures than POTS. I was tested up and down for POTS for MANY months, up to and included wearing a ambulatory EEG for 72 hours. It's definitely seizures. I was also told that the reason they put off testing me for POTS for so long is that some of the stuff was a bit more likely in other disorders, but not unheard of in POTS. Finally, all of my Cleveland Tests supported the diagnosis of POTS, blood pooling, positive tilt, etc. So even though most of my doctors have no doubt it is POTS, this one doctor trying to reinvent the wheel and diagnose me with things I definitely do not have just set me over the top. The next thing he said was that in order to try mestinon, after I think I somewhat convinced him that we ruled out everything else and that the tests support POTS, was that he wanted me to see their EP. I may just still be over frustrated at the moment, but right now I am leaning towards cancelling my EP appointment. I can't keep going from doctor to doctor being told I cannot be helped. It's not good for my mental and physical well being. I think I am just going to return to my primary physician and try asking her for IV Saline therapy. Anyway, I needed to just wind down from the appointment, and I do that best by writing things out.Fainting Goat Quote Link to comment Share on other sites More sharing options...
dkd Posted April 19, 2014 Report Share Posted April 19, 2014 Sorry your apt didn't go well. I've had so many of those too and I know how disappointing it is. I was diagnosed by an EP, so my opinion is go to the EP The regular cardiologist that I saw didn't pick up on the dysautonomia at all, but the EP saw it right away from all of the data that the regular cardio had seen also.I know how horrible it is to go into an appointment thinking this will finally be the 'one' where they have the answers and you can feel better soon, and then you leave without anything and you're just the same. Quote Link to comment Share on other sites More sharing options...
corina Posted April 19, 2014 Report Share Posted April 19, 2014 I hear you on this not being well for your mental and physical well being. When I got to that point I stopped searching for answers for the time being and concentrated on feeling as well as possible. Tried to enjoy life. A few years later I felt strong enough to start chasing docs again and found the med that worked best for me. I'm not sure this would help you, aren't you working on a Ph.D.? I wish it would be easier to find the help and answers you need! Warm wishes to you Quote Link to comment Share on other sites More sharing options...
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