Brye Posted June 16, 2009 Report Share Posted June 16, 2009 I've been dx with POTS just over a year ago and have been having difficulty finding the right med combo to control my symptoms. My EP was really giving it a good try and had even consulted with Dr. Grubb over the phone for some recommendations. He retired in January though and left me with an EP who has never treated a POTS pt and doesn't have time to figure out how. I live in AR but I have a lot of family in WI and I was wondering if anyone had any good/bad experiences with the doctors listed on the DINET site in Wisconsin. I've called Vanderbilt and Toledo and the waits are so long. I don't think I need the million dollar work up at this point I just need some treatment advice. Thanks!!Brye Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted June 16, 2009 Report Share Posted June 16, 2009 Hi Brye,I am in Wisconsin and see doctors at Froedtert. I was diagnosed by Dr. Barboi, have been consulted by Dr. Jaradeh, and am followed by Dr. Peltier. You can see information about them on www.froedtert.com under doctor search. Overall, I think the doctors are understanding and have a fairly strong background in dysautonomia. I believe there is usually a wait of several months to get into the clinic, so perhaps you could have your current doctor send your records for review. If you are from Arizona, they may be willing be look them over ahead of time and let you know if they would have anything different to offer you than the treatments you have been receiving. Please feel free to PM me if I can provide you with any other information. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
potsgirl Posted June 16, 2009 Report Share Posted June 16, 2009 You live in Arkansas, not Arizona, right? If you do live in Arizona, I have some good recommendations for you.Jana Quote Link to comment Share on other sites More sharing options...
mjan Posted June 16, 2009 Report Share Posted June 16, 2009 Hi Brye~!Sorry you are in this mess. I hope there is something close to you. But like Broken Shell I too see Dr Barboi at Froedtert hospital. He sees folks from all over. BUT.. you need to have your records and a referral sent to him first. THEN after reading your records his office will call and set up the appts and then testing. Let's see..I saw my great PCP in end of November I think..she did the referral and sent my records..then got a call in December for an appt at the end of January..with testing rather quickly in early Feburary. He was amazing. After years of NO ONE who knew what was going on..he knew right away just from my records and history..and I had already had a positive TTT with no treatment to follow. BUT then he did not follow me. He made a recommendation for a med but then my PCP was on Maternity leave and no one would help me. When my PCP finally came back and called him..then finally emailed him.. he was very apologetic and got me another appt to follow me. Not sure what the break down was..but his RN was good at returning calls and giving results and recommendations. I did not like not hearing the results from him so now I WILL be seeing him.My case is not as severe as many here. BUt I have so many other complications of related type disorders..I need someone who knows what they are doing. Good luck in your search.Jan Quote Link to comment Share on other sites More sharing options...
icthus Posted June 16, 2009 Report Share Posted June 16, 2009 I live in Illinois, 15 miles south of the Wisconsin boarder. I, too, go to Froedtert and under the care of Dr. Jaradeh. My EP (also professor at Northwestern) really wants me to see Dr. Barboi because he has heard so many good things about him. Either way, Froedtert has an autonomic lab and is an enormous hospital complex. There have been times when I have seen the doctor, and he gets me in right after the appointment to have some test done in another department - when they have an opening. But, at least they try to do this - reminds me of my Mayo experience. So far I've had good experiences there. Quote Link to comment Share on other sites More sharing options...
Brye Posted June 18, 2009 Author Report Share Posted June 18, 2009 Thanks for all the input. I actually do live in AR(Arkansas) I should have specified this since a lot of people confuse it with Arizona. We're planning the WI family tour for this summer and I need to get my appointments lined up soon! I'm hoping the WI doctors can give me some advice because that would be a very convenient location for appointments. I would even have good family child care to help with appts rather than dragging all my kiddos along.THANKS!!Brye Quote Link to comment Share on other sites More sharing options...
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