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Frustrated With Doctors.


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I had two doctor appointments this week.  The first was on Tuesday with my EP Cardiologist. We drove 1 1/2 hours to get there, waited 45 minutes past my appointment time and the doctor was in such a rush he wasn't even in the room for 5 minutes.  I learned nothing but got a new med to try.  He isn't interested in the POTS symptoms I have other than the fainting.  He even said, 'I would guess you have other things going on'.  Evidently it's not his responsibility to help me diagnose those other things and get back to health. 

My second appointment was with my PCP yesterday. He is wonderful and doing what he can to learn about this crazy syndrome.  However, I've been off work more than the 12 weeks the FMLA protects.  I can only seem to handle 1/2 days and then it seems I end up only able to do 4 days/week.  We talked about how you diagnose CFS, how you treat it, etc. but I walked out of the office with no tests ordered, no referrals and orders to continue working 1/2 days for another 4 weeks.  Just hoping that I bounce back.  

I am the primary breadwinner in our family.  I have a pretty stressful job, although my employer has been great so far.  My brain fog interferes with my work, not to mention having to get away to lay down during the day.  I have long term disability benefits, but it would only pick up 60% of my wages.  

Thank you for allowing me to rant and get this off my chest.  I'm just not making any progress and don't know what to do next!  

I was just diagnosed with NCS in December, but I've been fighting for my health since July.  

Any suggestions?  

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I feel ya. The first thing to do is find POTS specialist in your area. Unfortunately even my POTS specialist is not a Dr Grubb or Mayo clinic, but he does know about Dysautonomia and that helps. He kind of things it's all one illness which isn't great, but better than nothing. I went to on Dr. who sees Dysautonomia patients and can do a Tilt Table Test but he wasn't that knowledgeable. I feel like outside any major autonomic lab setting doctors are just not as informed as we'd wish them to be :-/

So what I do is research all the test I hear about on her and that are listed in some clinical studies and I try to go to different specialist to test for them. So far I have about 6 specialist. And what i do is print out the info on the Dinet.org pages and give it to them and talk to them about how a lot of people with Dysautonomia could have issues with their specialty. Then I list a bunch of test that some people on here have mentioned or that I read about and hope they will understand and test for things...

I've been through the same thing with work. I've had major flares since Dec 2010. I lost a good job I had for two years. I was dumb and didn't even think of FMLA, then I finally got a new job after 6 months, that was even better than the last but then had my biggest flare yet and lost that one too :( Now I'm starting to apply for disability. It doesn't cover anything close to 60% of my salary, more like 10%.

I hope you recover soon, but we are all with you so don't feel alone..

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