darren Posted January 2, 2008 Report Share Posted January 2, 2008 I?ll bet this will come as a shocker to those of you who have POTS and see a specialist that deals with POTS patients ? there is no such thing as a POTS specialist! Thats right, I had a doctor tell me this today. Unfortunately I think this is more the rule than an exception when your trying to find a doctor to treat your condition.Four months ago I moved from Florida where I had been diagnosed with POTS from the tilt table test. I was seeing a specialist there that has helped me make great progress with my condition. The last three weeks have been particularly hard as my health has taken a turn for the worse. It was time to start looking for a new doctor. I have loathed doing this because I knew the process would be painful.Luckily for me I have a close friend from high school who is a doctor out here. I asked him for help finding someone who deals with POTS. He is an orthopedic surgeon so he said he would have to do some research. Within a couple of days he had a name for me. I called the doctor?s office and made an appointment. To my surprise I only had to wait a couple days to see this new doctor. This was even better!I know from experience that most doctors don?t have a clue about POTS. Often they think you are making up your condition. I had hoped that since my previous doctor had written an 8 page study on my tilt table results that it would be easier to convince a new doctor that I indeed have POTS and I?m not making it up. Just to be sure I was taken seriously I went back to my military roots and got a clean haircut and shave. You would be surprised at the difference this makes.I arrived early and settled into my book. I recommend always having a book available for the long waits. I knew it was going to be bad seconds after he called my name to come back to his office. He did not greet me at the door, rather walked down the hallway and disappeared into his office as soon as he was sure I saw where he was going. I brought all of my records with me just in case and got back to his office. He neither introduced himself or shook my hand. My old military habits waited for him to ask me to sit down. I soon realized this was silly and he wasn?t going to extend any common courtesies so I settled in the chair across for him. He hardly looked up at me.He fired a barrage of questions at me that required a yes or no for an answer. He asked me what medications I was on. I responded with my long list. He hardly looked up and muttered, ?I don?t understand why your on those medications?. He asked me who I had seen, I told him a POTS specialist in Florida. He point blank told me, ?there is no such thing as a POTS specialist?. I was stunned. I thought about arguing with him but I already knew he wasn?t listening to me. He asked me about my headaches, about my dizziness. He never asked me about fatigue or any of the other symptoms I was having nor did he give me a chance to talk or give my history.I told him I have the tilt table test results with me and as I reached for them he told me it wasn?t necessary and asked me to go into the examining room. I got up and trotted after him. He told me to remove my shoes and stockings (stockings, what is this 14th century England?). Then he pulled the classic doctor move and told me he would be with me shortly. This is where they leave you in the examining room for about 10-15 minutes while they do god knows what. Maybe he was looking up POTS? I associate this tactic with customer service for large telecommunication companies where you call to complain about service and they leave you on hold hoping that you hang up or transfer your phone call to India.The plus side of this is it gave me a chance to think about what I?m going to do when the inevitable comes. I thought about maybe using colorful language, or maybe just walking out of the examining room and trying to salvage the rest of my day. In the end I chose to not give him any reasons to solidify his conclusion that I?m making this up.Eventually he returned and began the physical examination that I had been through numerous times and knew that I would pass. Of course this involved taking my blood pressure while laying down, sitting up and standing. I have passed this time and time again but failed the tilt table test. It also takes a little bit longer than 20 seconds for me to go tachycardia upon standing. Which is probably why the tilt table test takes 40 minutes. But hey what do I know I was seeing a made up specialist.After the test he said nothing more than, ?you can put on your stockings and shoes and come back to my office?. Again, whats up with the stockings? He left abruptly and I knew it was not going well.I went back to his office and he point blank told me I don?t have POTS. I was so excited that I was spontaneous cured (note the sarcasm)! The doctor then told me that my dizziness was probably caused by the migraines. I stated that I was under the impression that the only way you could definitively test for POTS was with the tilt table test. He brushed this off and told me that because I didn?t go into tachycardia that I don?t have POTS. Keep in mind he took my blood pressure and heart rate immediately upon me standing. I?ll wasn?t standing up for more than a minute before he had me put my shoes back on.He asked me if I needed refills on the prescriptions (the very same ones he didn?t know why I was on). I told him yes and he wrote them. At this point the doc asked to see some of my records. I quickly gave him the 8 pages on my tilt table test results and he read through them briefly. After he handed me the prescriptions he asked if he could keep the test results I flatly told him, no. Then he said to continue with my prescriptions and come back and see him in a year. At this point I was done and I walked out of the office. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted January 3, 2008 Report Share Posted January 3, 2008 Ugh...I am worked up just from reading about your experience. It's all too familiar - doctors who don't know/don't care! I am so sorry that you had this experience and hope you can find a new specialist who will be able to help! Quote Link to comment Share on other sites More sharing options...
ehl5 Posted January 3, 2008 Report Share Posted January 3, 2008 Ugh, I hate docs sometimes. Best of luck to you in finding a better one! Quote Link to comment Share on other sites More sharing options...
runningshoe Posted January 3, 2008 Report Share Posted January 3, 2008 So well written I felt like I was there. Wow, I hope you can laugh instead of cry because that visit sounded pathetic (and what is up with the stockings?) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 3, 2008 Report Share Posted January 3, 2008 Unbelievable! You did take the reader there with you...Thank you for sharing and sorry for the frustration.I was hoping for a moment there that you stood up and said something clever and stormed out of there barefoot shaking your "stockings" and shoes exclaiming "no such thing as a pots specialist? bah, Hubug!" But that will come in another two or three quack doctor visits... Keep us posted and good luck with the search.best regards,tearose Quote Link to comment Share on other sites More sharing options...
darren Posted January 3, 2008 Author Report Share Posted January 3, 2008 Thanks for the replies. I know this is pretty common for everyone here at DINET but when I tell my family and friends they can't believe it. To be honest Lina the stockings thing was all that kept me from losing my temper. In my mind I was about to explode but then a little voice in my head would say, "stockings?"I had very low expectations based on previous experiences so I suppose that helped. I actually had a military doctor try to label me with a conversion disorder and two days later I failed the tilt table test horribly. I am more angry at this doc because I had actually been diagnosed with something and he read the report but told me I didn't have POTS. I would say looked me in the eye but he was unable to hold eye contact with me. At least from an analytical point of view I can see how the military doc wanted to explore a conversion disorder because I would argue with her every week there was something wrong but yet she couldn't find anything. I'm sure most of you have two or three stories just like this or worse. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 3, 2008 Report Share Posted January 3, 2008 I think you should have slapped him silly with your "stockings." Amy Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 3, 2008 Report Share Posted January 3, 2008 He might have requested a duel at dawn if you'd hit him with your stockings! I had a doctor tell me there was no such thing as inapropriate sinus tachycardia, 3 days after ablation for it. Tachycardia 24/7 was perfectly normal....gosh and I spent so much on that procedure.My favorite is still the one I read on some records I just got. I had a very anxious flat affect. Maybe my stockings were too tight... seriously, sorry you have to go through the ordeal of finding another doctor. I have yet to find one that doesn't believe I'm 5% sick and 95% crazy. They MAKE me crazy.....morgan Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 3, 2008 Report Share Posted January 3, 2008 What is this guy's area of expertise? Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 3, 2008 Report Share Posted January 3, 2008 17th century footwear, obviously. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 3, 2008 Report Share Posted January 3, 2008 You did a great job of telling your story! I totally understood. Yes, yet another one of those drs.... I hope you have better luck finding another dr. that hopefully will not be anywhere as bad!Stocking thing was weird! Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 4, 2008 Report Share Posted January 4, 2008 Hi,Thanks for sharing your story. This is very pathetic. You have excellent writing skills. Have you thought about a professional writing carreer?Good luck finding a competent doctor. Quote Link to comment Share on other sites More sharing options...
darren Posted January 4, 2008 Author Report Share Posted January 4, 2008 Thanks so much for the compliments. My history is off I should of said 17th century for the stockings thing . I find writing about this stuff to be very cathartic. On top of that things change so often that we often forget what we tried and how well it worked. If I write it down there is at least some record of what was going on. I've thought about writing occasionally. Its allot of love to put into something that may or may not work out (statistically not). I might look at it more though, I appreciate it. This kind of treatment puts anyone through a full range of emotions. From, "maybe I am crazy?" to "I should of stuck up for myself in there". The only logical thing to do is check this one off the list and move forward to try something else. Giving up or quiting is not an option. I'm not saying I made phone calls for new doctor yesterday and I probably won't today. I can't spend every waking minute chasing the magic doc but if I don't look today I will on Monday.Three huge points I learned here. - Don't bother seeing anyone who doesn't specialize in this condition. I can get a primary care doctor to run refills but for real changes to my health I'm going to have to travel. - I'm going to sit down and type out my medical history. So many times I have been to see a doctor and they have asked when i was diagnosed with this and that and what I was taking, when and how much, what my symptoms are. Half the time if I felt great I would forget some of this information but if I'm crashing prior to the doctor's appointment I won't remember much. I end up having to think about it and really not looking like I know what I'm talking about. Next time, I come in the door and I had the doc a couple pieces of paper with everything on it. Would this of helped me with this last doctor? Nope, this one was a lost cause. - I'm actually thinking about recording the interview portion of the appointments. Yes some of it is to show others how ridiculous some doctors are but mostly so I can remember the good stuff that was said. My last doc (the specialist that doesn't exist) would spend an hour and half just talking to me about what is going on with my body and what I can do to help. Sure I remembered the high points but there are details I just don't remember. I wouldn't hide the fact that I'm recording, just let the doc know that sometimes I don't remember details very well and place it on the desk. This might have negative impacts on the visit so I'll have to think about it. Thanks again. Hopefully you got some chuckles and maybe even raised your blood pressure a bit since that is a good thing for some of us.Oh he was a neurologist btw. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted January 4, 2008 Report Share Posted January 4, 2008 Darren,Like the others said, I felt like I was right there with you because of your excellent writing style and because I've actually been there. So sorry you wasted your time and money. It's happened to me so many times. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 4, 2008 Report Share Posted January 4, 2008 You might be better off seeing an electrophysiologist. EPs should at least have heard of POTS specialists and have a rudimentary understanding of its treatment. I would try that before travelling. Sorry for your awful experience. Quote Link to comment Share on other sites More sharing options...
worththewords Posted January 4, 2008 Report Share Posted January 4, 2008 Wow, you should have told him he wasn't worth your co-pay! I've had to say that before. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 4, 2008 Report Share Posted January 4, 2008 Worth the Words,Did that work out? Wow, I am not sure if I would be that together thoughtwise, and be up to the challenge! Good job! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 5, 2008 Report Share Posted January 5, 2008 How's the physician search going Darren?I gave up on finding a local POTS doc. I have an excellent local internist that helps me manage my local medical team(cardiologisy, urologist, neuro-opthmalogist...) so to speak. We both read and try to keep up with any new information on dysautonomia. I go back out to Mayo in MN when I have a major new or worsening issue to deal with.Not the ideal but the best I could come up with.I think many do the same as I do.best regards, tearose Quote Link to comment Share on other sites More sharing options...
worththewords Posted January 5, 2008 Report Share Posted January 5, 2008 Worth the Words,Did that work out? Wow, I am not sure if I would be that together thoughtwise, and be up to the challenge! Good job!It was a cardiologist I saw for the first time that was telling me that I was sort of doomed since I have POTS and my life-span would be shortened. THEN, he had to step out and take a call from his attorney. (Hmm, wonder why?!) That was enough for me to just walk out and a nurse stopped me and I told her the doctor wasn't worth my co-pay. She apologized and they never did charge me for a visit either. Quote Link to comment Share on other sites More sharing options...
darren Posted January 7, 2008 Author Report Share Posted January 7, 2008 Thanks for the words everyone. I'm going with your advice tearose. I'm just going to find a primary care doc that can manage the symptoms. Maybe farm me out to a specialist. My wife says I would like her doc so he must be ok as I tend to find reasons to not like people Quote Link to comment Share on other sites More sharing options...
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