Chaos Posted December 3, 2009 Report Share Posted December 3, 2009 I am SO happy to have found this website. The more I read about dysautonomia and POTS the more I find myself saying, "wow, all these people are describing MY life". I'm almost positive I have EDS and POTS but am not sure who to see to get an "official" diagnosis. It looks like I need to go to Mayo or Cleveland Clinic but am unsure how to start the process. Is there some way that you can get all the testing done during one trip? I live in New Mexico so it isn't easy (or cheap) to get to either of those locations. Also, who do you see for EDS? Like so many others on this site, I've been through countless specialists and tests with no clear diagnosis. I'd really like to make any further appts and tests actually be worthwhile. (Hee Hee- like that will always happen!) I'd really appreciate any of you who've been thru the process giving me any tips you can. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted December 3, 2009 Report Share Posted December 3, 2009 Hellooo and welcome!I'd go back to your "specialists" and ask for copies of everything! (it will cost you copy fees) Organize yourself. Talk to your general practice doc, as long as he/she is with you on this, or whatever doc IS and get them to write letters to the clinics to get an appointment. (This was necessary for Vanderbilt, I don't know about the others) Keep a log of "poor man's tilt" tests. On several occasions, on different days, take your BP and HR while lying down and then at one minute and three minutes of just standing. Good luck! I'm sure others will chime in soon. Quote Link to comment Share on other sites More sharing options...
kayjay Posted December 3, 2009 Report Share Posted December 3, 2009 If you have seen a cardiologist.. you may want to call and ask for a tilt table test. many hospitals can do this. If you have a positive tilt test it will be easier to get in to Mayo or wherever. I had the tilt and then my cardio contacted mayo for me. Good luck to you. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 3, 2009 Report Share Posted December 3, 2009 Welcome aboard!I suggest you write down all your symptoms, history and sit down with your PCP and come up with a plan. You need a good relationship with one main doctor, hopefully your PCP, to help you navigate the journey before you. That doctor will help arrange your visit to a special testing facility...one with a complete Autonomic Nervous System Testing Center (ANS). While at that "Center" you should be able to have ALL your testing done and get a diagnosis. The three centers most people have gone through are: Vanderbilt (TN), Cleveland Clinic (OH). Mayo Clinic (MN).Yes, you do absorb the cost of travel, accommodations...but you are worth it!Once you get a complete round of testing and dx you and your ANS doctor will be able to address your issues with an appropriate treatment plan. Then, you return home with a treatment plan to work on with your local PCP and hopefully, some quality of life will return!We are here...keep in touch!Best regards,tearose Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 3, 2009 Report Share Posted December 3, 2009 I went to Mayo Clinic in MN where they have a specialized team of doctor for ANS issues (neurologists). You can make an appointment on your own, or have your PCP or cardiologist refer you. You have all of your tests done, and if you need to see another type of doc (like I also saw a cardiologist), they set those appointments up for you as well. It's one-stop diagnosing, but you need to prepare to stay there until your testing is done. There's no way for them to know in advance how long you'd need to stay. I was there about 8 days, but it was well worth it. Dr. Brent Goodman was wonderful, and spend lots of time discussing things with me. I know the other clinics are good, too.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 3, 2009 Report Share Posted December 3, 2009 Jana makes a good point.I was told to plan on being at Mayo for a week and it wound up taking two weeks. I was willing to stay because they weren't done and I wanted answers. I was glad I stayed and it was well worth the extra time. So build in flexibility when you make your plans. Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 3, 2009 Author Report Share Posted December 3, 2009 Thanks for your words of wisdom and experience. I truly appreciate it! I see my PCP next week so will go armed with my list of symptoms and a LOT of new information on dysautonomia for him to consider. He's been pretty sympathetic, but also frustrated, over the last 4 months as he hasn't been able to come up with any ideas other than the mono. He's known me for 22 years so he understands that this is NOT my "normal" way of being. He's even said "I can't get used to you with no energy." I have two sisters who are nurse practioners and they've also been frutarated at not being able to come up with any answers for my health issues. I was asking them if they'd heard anything about dysautonomia and they said "no, you have to get on the internet to find out about things like that." (They're both very compassionate healthcare providers and really try to stay up with new information. Maybe my experience will help them with their patients now too.) All I can say is THANK GOD FOR THE INTERNET AND ALL YOU PEOPLE ON THIS WEBSITE!!!!Any other helpful tips would still be very welcome.Do you see a rheumatologist for an EDS diagnosis? Quote Link to comment Share on other sites More sharing options...
flop Posted December 4, 2009 Report Share Posted December 4, 2009 My EDS was suspected by my POTS specialist (Prof Mathias, neurologist) so he referred me to an EDS expert (Prof Rodney Grahame, rheumatologist) to confirm the diagnosis.Good luck with working through all this stuff, sounds like you have a caring PCP who has known you for many years - a good PCP is really important. They don't have to know about POTS / dyasutonomia, just be willing to read and learn along with you and liase with any specialists that you may see for POTS testing. Buying a copy of the DINET documentary may well be useful for you to share with your PCP and sisters.Flop Quote Link to comment Share on other sites More sharing options...
BelieverEM Posted December 10, 2009 Report Share Posted December 10, 2009 My advice: take your time and see someone who knows about POTS, and tell them that's what you want to be evaluated for. It took me over a dozen years, countless neurologists (the latest and supposedly best of whom diagnosed me with Psychosomatic Disorder), and three cardiologists who all somehow missed this! I was diagnosed with EDS by a geneticist 6 years into my medical nightmare. It was missed by cuntless orthopedic surgeons, physical and occupational therapists, ER docs, 3 PCPs, an rheumatologists.Recently, I came across POTS on an EDS discussion board. I found dinet, and saw a physician from their list. I had my testing this week, and yesterday was finally given an official POTS diagnosis.Hang in there, and trust what you know about your own body. Keep us updated.God bless, Erin Quote Link to comment Share on other sites More sharing options...
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