CDJ Posted January 15, 2007 Report Share Posted January 15, 2007 (edited) We just got back from Vanderbilt.They did Autonomic testing and of course I was having a good day and did not pass out!!however my hr exeeded the gage on the test,it stops @200bpm. The Dr saw seems very intelligent, but did not come across as compassionate. He dx me based on the testing from that day as hypersensitive sympathic disorder as well as IST.Apparently my BP is going from very low to very high now,which I have noticed in the last few mos.He does not seem to be a fan of ablations however, he deemed mine a success. I went there with the impression that I had beta-hydroxylase deficiency,but apparently I don not.I just have a high level of Dopamine.He did blood tests to confirm this because he based this on blood tests I had brought w/me.He also suggested IV fluids @ home.He will compose a letter of recomendations to my Dr. here at home once the blood results are in.He did not seem interested in me for trials due to the duragesic patch I wear for back pain.I was sorry I asked questions because his answers were lengthy and confusing.He is "outraged with the dx of Dysautonomia" because he feels this is a "Junk" word that has no medical definition related to pots.That kinda surprised me. I filled out the family history section of the application and listed my mother as having Diabetes.I also included my dx of hypoglycemia and he went off on a tangient about people that self dx using a family members glucose monitor and when I tried to explain to him that the glucose monitor used for Diabetes does not accurately measure hypoglycemics and that I was medically(by a real Dr.) but he just continued talking right over me. The nuses and residents were very thourough.They, as well as the facilty, was impressive. When I asked how my long list of dx from other specialties tied into pots he did not seem to have any answers.His respose was very clear......"That is not my specialty" needless to say he seemed to be rather uneffected by the fact that someone was desperate for help and some answers.I was soooo bummed!! I had a long lit of questions that I got no answers to.My doc in chicago seemed to know more.I am waiting to go to mayo,maybe they will be better. Edited January 15, 2007 by MightyMouse Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 15, 2007 Report Share Posted January 15, 2007 I am so sorry you did not get the help you hoped for.It sounds like this doctor was on a soapbox about the word dysautonomia, I don't understand. It is a general term to mean dysfunction of the autonomic nervous system. Does he want give you a more specific dx? Why doesn't he do so! He sounded more interested in hydrating you and not dealing with other symptoms.I understand your frustration and I am so sorry.He wasn't listening to you.We hope to get some piece of new and helpful information when we make these "special" visits and you only got frustration!I hope you will get something more concrete when you go to Mayo.take care, tearose Quote Link to comment Share on other sites More sharing options...
cardiactec Posted January 15, 2007 Report Share Posted January 15, 2007 first of all, it's nice to see i'm not the only one with a heart rate over 200! i know there are a couple others who are like this, but they are/seem to be few and far between. sorry your experience didnt go well. i was planning to go to vandy and see that same doc you mentioned. actually i was surprised by him, i sent him an email and he kept replying to me. very surprised that he cared enough to get back to me, but perhaps seeing him in person is totally different. i asked him mainly about ablation (as you did) because i told him i seemed to be somewhat "out of the box" with a couple others who have EXTREME tachy when upright, and as you said, he's not a big fan of the ablation. i even faxed him two of my ECG's so i could prove to him how messed up certain waveforms look and he confirmed that something looked odd but still said he wouldnt do an EP study (was surprised that he even looked at the ecg's and wrote back to me his impression, typically you arent really supposed to do that via online)..........but anyway, he was trying to get me to come down for their research. i have decided against it because i have been to many research centers, including mayo (which i noticed you said you were going to next) and not really impressed with any of them. perhaps it's because nobody has really offered too much treatment wise or ANSWER wise......i know with mayo, if you dont go back and follow up with them, it is hard to gain any ground treatment wise or follow up via phone wise. my docs have been trying to get ahold of them for months to figure out "what do to with me" and no one has contacted my docs back....YET....like you said, some even seem to be "suspicious" of the POTS patient. i got the same rap about using the umbrella term dysautonomia from another center saying that pots wasnt even a true dysauto......so i guess it all depends who you talk to??? not sure....how do they check for beta hydroxylase deficiency? how did he determine the IST above or beyond POTS? were you tachy when supine too? usually they will determine IST WITH OR without POTS if you are tachy when supine.........sorry to hear you didnt gather the info or sense of compassion you were looking for at vandy. hopefully, if you go to mayo, you'll get better results/understanding there..... Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 15, 2007 Report Share Posted January 15, 2007 That is the craziest thing I ever heard........................POTS not being a "true dysautonomia".People with POTS have a form of Dysautonomia---ANS dysfunction. Our ANS is messed up-- That's like saying hodgkins isn't a form of cancer-----ding, ding, ding-----wake up!I'm sorry that you didn't get the answers you have been searching for. This is a complicated illness, and some physicians would rather make the patient feel dismissed then admit they don't get it. Dysautonomia is not even considered an"orphan disease" anymore. More of us have this then people who have Muscular Dystrophy. This came out of the mouth of one of the top ANS experts in the world.This guy was at Vandy? I hope you can find the help you need--I'm so sorry you had to deal with such ignorance.Big Hug,Maxine :0) Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 15, 2007 Report Share Posted January 15, 2007 Well that TOTALLY STINKS...I can't imagine a doc at vandy calling dysautonomia a waste basket dx?????????????What is the problem with some "specialists?"Though in all honesty, i have a girlfirend that has seen docs at vandy, and one is nice one visit and chastising her the next. so these good docs have their moods..but she lives in the area...for folks that travel distance to see SPECIALISTS, it is always MOST DISAPPOINTING when the visit isn't fruitful.I am sorry you were treated the way you were. Quote Link to comment Share on other sites More sharing options...
CDJ Posted January 15, 2007 Author Report Share Posted January 15, 2007 first of all, it's nice to see i'm not the only one with a heart rate over 200! i know there are a couple others who are like this, but they are/seem to be few and far between. sorry your experience didnt go well. i was planning to go to vandy and see that same doc you mentioned. actually i was surprised by him, i sent him an email and he kept replying to me. very surprised that he cared enough to get back to me, but perhaps seeing him in person is totally different. i asked him mainly about ablation (as you did) because i told him i seemed to be somewhat "out of the box" with a couple others who have EXTREME tachy when upright, and as you said, he's not a big fan of the ablation. i even faxed him two of my ECG's so i could prove to him how messed up certain waveforms look and he confirmed that something looked odd but still said he wouldnt do an EP study (was surprised that he even looked at the ecg's and wrote back to me his impression, typically you arent really supposed to do that via online)..........but anyway, he was trying to get me to come down for their research. i have decided against it because i have been to many research centers, including mayo (which i noticed you said you were going to next) and not really impressed with any of them. perhaps it's because nobody has really offered too much treatment wise or ANSWER wise......i know with mayo, if you dont go back and follow up with them, it is hard to gain any ground treatment wise or follow up via phone wise. my docs have been trying to get ahold of them for months to figure out "what do to with me" and no one has contacted my docs back....YET....like you said, some even seem to be "suspicious" of the POTS patient. i got the same rap about using the umbrella term dysautonomia from another center saying that pots wasnt even a true dysauto......so i guess it all depends who you talk to??? not sure....how do they check for beta hydroxylase deficiency? how did he determine the IST above or beyond POTS? were you tachy when supine too? usually they will determine IST WITH OR without POTS if you are tachy when supine.........sorry to hear you didnt gather the info or sense of compassion you were looking for at vandy. hopefully, if you go to mayo, you'll get better results/understanding there.....Firs of all thak you for your reply,they determine the Beta Hydroxylase Def. by drawing blood standing sitting laying.Apparently my lab at home only drew blood sitting but in doing so my dopamine was quite high.The dr. said even with the draw being done wrong that I would show a goose egg for epinephrine,to be sure about jis dx he had me drawn there,I should get resuts today.The IST was determined by blowing ito a tube(brain fog and can't remember the name of the test)for 15 seconds,while doing so my hr hit 200 right away. The tech said they do not see many of those.I am tachy most of the time.I used to be 160-180 while I was sleeping,since the ablation it is now 120 in my sleep.I hope you have better luck than i did.Just make sure when you speak you don;t miss anything because it may be awhile before he lets you speak again!! Best of luck!!! Quote Link to comment Share on other sites More sharing options...
sfrnklin Posted January 17, 2007 Report Share Posted January 17, 2007 CDJ,I am so sorry this happened to you. It is the same story over and over from different people it seems that go to these big hospitals. If I were you, I would get a referral from my doctor and go to Dr. Grubb. He is one of the leading Dr.'s in dysautonomia. I love him. He helped me when no one else could. He gave me all the answers to all my questions and more...This is just my opinion. I will pray for you. I hope the best for you in your quest for dx and answers to your questions. I know how you feel. I was in your same position last year till I found the right dr. I hope you do too.Susan Quote Link to comment Share on other sites More sharing options...
mom4cem Posted January 17, 2007 Report Share Posted January 17, 2007 I'm sorry you came away feeling disappointed. Even at acclaimed places does not mean the dr's are compassionate and unfortunately as you pointed out, don't see outside the box. I've been to a few dr's who when I said about having mitral valve prolapse syndrome/dysautonmia, as well as fibromyalgia, they said, "well, you know that is just a fad diagnosis", "wastebasket diagnosis". When I notice that a doc is heading down that road, I now say it for them, they look at me, and say, that's right,,I'm like, yeah, heard it all before.I don't know how you got to vandy, thru your own doc or on your own but perhaps back at your own, reg. doc you can get to see Dr. Grubb. I've not seen him personally, but from what everyone else says, he knows his stuff, is compassionate and his staff also. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted January 17, 2007 Report Share Posted January 17, 2007 mom4cem, i know how you feel about the MVP thing. i dont even tell docs now, new docs i see, that i have MVP because they look at me like "who cares". some of them roll their eyes even at the mention of MVP. one er doc i told, when he asked med history, i just briefly ran down the small list of things, one including MVP, and he IMMEDIATELY jumped on that saying "oh did you know that people with MVP are anxiety and panic stricken, so perhaps that is why your heart is beating fast"..............................ugh! yeah, so i dont even tell anyone about the MVP cuz they all just think its irrelevant medical history and that it is not pertinent or linked to any medical problem that could potentially occur. interesting since there are some with MVP who needs valve replacements cuz the valve is so leaky, or people that have MVP who are more suseptible to endocarditis..........?? yes these people are few and far btwn, but it still happens with some MVP'ers...................and NOT all people with MVP have anxiety or panic problems! Quote Link to comment Share on other sites More sharing options...
Donna F Posted January 17, 2007 Report Share Posted January 17, 2007 I am just curious, I was goin to Vand. until i found a doc closer and he is wonderful. He has the disorder himself, and so compassionate. I heard from diff people sitting in the waiting room, etc, that most of the drs at Vandy want to find patients who have the certain symptoms for their test, and if u dont qualify as their "perfect candidates" most get u thru whatever they do and u leave feeling as if a waste of time, and feeling worse about ur condition. Not sure where all if located, i am sure most of us is all over, I have saw alot about this Dr Grubb where is he at? I am in Mobile, Alabama, the closest doc i found is Dr. Charles Thompson in Pensacola, Florida, he is great if anyone is close and would like his num i would be glad, he is the first doc who seems to really care. Sorry for ur trip to Vandy!! Donna Quote Link to comment Share on other sites More sharing options...
wibbleway Posted January 21, 2007 Report Share Posted January 21, 2007 I went to Vandy for all the Autonomic Testing and really found them wonderful. That was 3 years ago and they still e-mail me instantly with questions I have. Dr. Robertson and the whole staff were marvelous. I'm sorry you had a bad experience but do recommend them highly. Quote Link to comment Share on other sites More sharing options...
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