Fall-Di Posted February 13, 2015 Report Share Posted February 13, 2015 Those were the exact words from my cardiologist to my neurologist.He told the Neuro if it would give me peace of mind he would refer me. My Neuro sent me to the cardiologist in November to get the tilt test done. My BP drops 30 pts when I stand and my pulse nearly stops. Tried Fludro and Midodrine. Midodrine worked for a short time - 2 weeks, then I was back to near fainting and dizzy all day. Cardio told me to get tested for Diabetes Insipidious and to drink a lot of fluids and that was all he could do for me. I couldn't get my cardiologist to refer me so I got on this site and got names of doctors in my area and then I started calling to get my referrals. My GP told me to have my Neuro refer me to OHSU for the test, which is what I wanted. I called his office and left a message, he immediately called the cardio and called me back and gave me the above info.So here is my question, is this Cardio an idiot or is he right. Does this test matter?He seems to think his semi-god-likeness declaration of confirmed OH is enough. Sorry, I am a bit angry. But don't I need to know more?Thanks for listening,Di Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 13, 2015 Report Share Posted February 13, 2015 Hi Di,I can only share with you my experience. My first ttt allowed the doctors to diagnose (and not question) POTS. My second ttt, which was conducted on specialized equipment at my pots neuro ' s office, takes constant vitals, not just the periodic vitals of a regular ttt. That allowed us to see some split second crashes in my bp that had not been apparent during the first ttt or my office visits. So, I feel they both gave us information we needed.The other reason I'm glad I had my ttts is that they were solid supporting evidence during my hearing for social security disability. This may or may not be a consideration for you. If you think you might need this at some point, my experience has been that hard evidence goes a lot farther than a single doc's clinical diagnosis. Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 13, 2015 Author Report Share Posted February 13, 2015 Thank you Katy,I have been on disability for a couple years already, but it get reviewed every year or so. I hadn't thought of that. I am trying to decide on treatment, I have systemic Sjogren's running out of control an attacking a lot of organs in my body. There are a couple treatments to choose from and I feel like I need the info. I also was worried that someone would dismiss the drs diagnosis if someone checked me on a 'good hour' and changed my chart.Thank you!Di Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted February 13, 2015 Report Share Posted February 13, 2015 Hi Di,I can totally relate to your anger as I experienced the same thing. My former Cardiologist did a poor mans ttt and told me I had PoTS and I did not need a ttt. He said he had diagnosed me with it several years earlier. Such an arrogant little man. Geez. I didn't even know what PoTS was. He had sent consults over the years to my Internist with that information who then never discussed it with me. I had been on the wrong medications, getting worse and told there wasn't anything left that could be done to treat my condition. After doing my own research I realized I needed to see a dysautonomia knowledgable Neurologist and got a referral to Mayo Clinic. One of the first questions the Neurologist asked me was did I have a ttt done. I said no and he said how do you know you have PoTS then. I felt a bit silly when I said because that was the diagnosis my Cardiologist had given me. Having a ttt done is a very important diagnostic tool whether it's for diagnosing a b/p or a heart rate issue. Having a Cardiology ttt is much different then having a Neurology ttt though. The former is significantly longer and many times involves a drug infusion where as the former is only 10 minutes or less and does not typically involve medications. If possible the best approach is to have a full autonomic reflex screen. For me having a thorough evaluation done at Mayo, AZ was life changing. I am also on disability and am constantly aware of the need to follow up on any physician recommendations and keeping good records. Hold your ground if you feel as if something is not being done that should be. Janet Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 13, 2015 Author Report Share Posted February 13, 2015 Janet,Thank you so much. I was hyped up like a circus monkey before a performance this afternoon. I was really questioning if I was being over zealous in my attempt for better health and the ability to stand up. Then I took a shower.It's been four hours and I am just now recovering. I was finally able to unload half the dishwasher and that's when it hit me - I need to do everything I can to take of myself because this isn't right - and I stumbled back to my recliner. My first step is to fire my cardiologist!I am going to give OHSU ttt a try, it's done by a Mayo clinic trained neuro dr. If it isn't the full test I will head to Mayo Clinic.Again, thank you.Di Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted February 14, 2015 Report Share Posted February 14, 2015 You're welcome Di. I'm so sorry you had such a bad day yesterday but glad it motivated you to initiate some positive changes. We really do have to be our own advocates and as proactive as possible. Don't leave any stone unturned. I'm really glad you found this forum. There is much support here and information to be gleaned. I spent way to much time in the dark seeing doctors who misdiagnosed me, prescribed the wrong medication, gave me inaccurate information, were just plain rude and unprofessional. I could go on and on. I still get angry when I think about it all as it went on for a long time. I talked about it recently with my current Cardiologist who is wonderful and trying to learn more about my various issues. I do have some cardiac issues but I mostly see him to update him on anything new my Mayo Neurologist orders so he can be my back up at home if any problems come up. It is truly amazing how many doctors many of us have had to go through to finally get correctly diagnosed and managed. I'm sure I probably suffer from Post Traumatic Doctor Disorder as well. I'm trying to move forward now though and get past that dreadful season in my life. That's great that you are going to OHSU and getting a ttt done. Having it done by a Mayo trained Neuro is super. Hopefully they can do the full test. It is nice to have testing and followup closer to home but at least you know where to go if they don't have it available. All my best to you on your journey. Keep us posted on how things are going. Janet Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 15, 2015 Report Share Posted February 15, 2015 Fall-Di, I agree with the advice to get an accurate diagnoses, and complete testing by knowledgeable physicians. I believe your cardiologist revealed the extent of his knowledge and his attitude on the topic. You will not get good treatment there. I hope that things fall in place for you now. If I had to do over again, I would have went somewhere that did a complete autonomic work up by a sub specialist. Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 16, 2015 Author Report Share Posted February 16, 2015 Thank you all so much. Had a rough couple days and haven't been able to even sit upright very much. Mayo Clinic is still on the table (pun intended) at this point. I would love to do the test just one time, the right way.I am going to interview OHSU to see if they meet the criteria for the full test - been reading up on it. My insurance will cover most of the test, major pulse, but if it's not the full test I don't think I will waste my time.I am currently shopping for a new Cardio. Di Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 16, 2015 Report Share Posted February 16, 2015 TTT was defining for me. The EP in the area who trained under dr suleman was essential to get my diagnosis in my small town. Treatment on the other hand.... Quote Link to comment Share on other sites More sharing options...
mewinston Posted April 20, 2015 Report Share Posted April 20, 2015 I was extremely angry when I viewed the results of my ttt. I'm in rural Arkansas. Most doctors and medical professionals in my area have never heard of POTS. I don't even have my diagnosis on paper yet. The ttt was performed incorrectly, and like all of the blood pressure cuffs and stethoscopes before it, the tilt table was determined to have malfunctioned when my bp and pulse were obviously abnormal. Also, it was done on a "good" day. Three years later, and my doctor had sudden amnesia the other day, like he'd forgotten completely who I was. He's always been great trying to treat my Dad and I as best as he can, but at my last appointment he acted confused about my condition and said he'd call me? No call yet. I need to see a specialist. I can't work, can't even live my home life. I'm always hurting or tired or having seizures or passing out. I'm having to move home, and my doc prescribed me a wheelchair that I'm not even sure insurance will cover. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 20, 2015 Report Share Posted April 20, 2015 Hi MEWinston,I'm sorry to hear how much you are struggling. I've been there. ..with the POTS and the seizures.I know you mentioned you are from a rural community in Arkansas, have you thought about seeing if any of the major universities have any dysautonomia/syncope centers/Electrophysiology Centers that are closest to you?Also, I wanted to mention that Dr Svetlana Blitsheyn (who is also a medical advisor for DINET) http://drblitshteyn.com/ is a mayo trained neuro who does phone consults for patients who can't travel or don't have access to physicians who have knowledge of dysautonomia in their area. You'd have to call the office for specifics, i.e.) if it's covered under insurance because I honestly don't know the answer to that.Welcome to DINET! Again, sorry you have so much going on. Hang in there, you are amongst friends here! Sarah Quote Link to comment Share on other sites More sharing options...
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