I Had One Of The Worst Doctor's Appointments Today.

[jangle]

Saw my doctor today to talk about possible causes of POTS. He basically went into attack mode and told me I'm making it all up in my head and that I'm a hypochondriac and I need to see a psychiatrist to get my head examined. I told him that POTS has had a profound impact on my life, and he told me that's what all hypochondriacs say, "Oh man I just want to be normal" "well what is normal?"

I just wanted to tell him that normal is NOT having your heart rate go up to 130 beats per minute everytime you stand.

You know, what he said was a slap in the face to all the researchers out there who treat POTS. Dr. Stewart, Grubb, and Levine would have a lot to tell my doctor in the way of this being a hypochondriac case.

Heck, I guess even astronauts are just hypochondriacs.

I didn't say any of that, I didn't even acknowledge his statements. But I got so ridiculously pissed off, I did all I could not to just unload on this doctor. And it's so sad. it.is.so.sad. that what can we do? You know? What can we do. They don't care, they don't read the medical records, they don't research the illness. They just fit it in a convenient box and ship it off to crazy land so they never have to think of it again.

What the heck? You know I see commercials for IBM's Watson. Good grief, I wish Watson was my doctor, that robot's programming sounds so nice when it talks to you and sympathetic. I would love that robot for my doctor as opposed to my doctor I have now.

Oh? POTS is all in my head? Ok. Go enjoy your $250,000 salary, I'll just go back to having my butt perpetually kicked. Sounds great.

I'm going to figure this thing out myself, because I have to. Forget this.

[lalalisa]

This is just terrible. I'm so sorry for the extra stress this must be causing you. I hope you can find a better dr. quickly!!!

Blessings,

Lisa

[sue1234]

That's awful! And, unfortunately, not that rare of a doctor's visit. YOU know better than that nonsense, so keep moving forward, looking for one of those few doctor gems out there!

I still think it would be easier if we could actually see a PhD researcher just for a bouncing board on possible ideas.

[kluesyk]

So sorry you had this experience. I just posted earlier about a horrible dr visit with a new immunologist. It is so upsetting when we are so sick and are treated this way.

[Lemons2lemonade]

Jangle, he is ignorant, don't be afraid to use that term. Ultimately, he is saying that his opinion outweighs the viability of the research coming from the top medical organizations in this country. Also remember, he is not a researcher. He is a diagnostician.

[jangle]

Thanks Lemons. I hope you haven't had to encounter a doctor like this before.

[Trach]

Jangle,

You should not be treated like that at all. I am so very sorry. Doctors can be so ignorant and rude. I hope you will start finding a new one soon. Where do you live?

Because I have problems traveling right now, I finally resorted to a telephone conference with a POTS doctor out of state, Dr. Blitshteyn. (this is after I had my autonomic testing completed and I had problems with the doctor) Dr. Blitshteyn reviewed my medical records, recommended various tests, and set up a well thought out treatment plan. I can call or email her with any questions. I chose Dr. Blitshteyn because she also has a strong background in both POTS and migraine treatment. Just an idea.

Do not let him get you down.

[ramakentesh]

I agree with Lemons. I usually say its the Wiggles Disease and they tend to get it then. Im surprised about the docs that do know about it nowdays. Back in 2003 no docs knew. A cardiologist I met knew about it and understood it was disabling so word is getting out slowly.

But what do you need docs for? Im yet to be convinced that any of the medications prescribed for POTS are superior to herbal options and some even placebo!

[issie]

Jangle, you're not alone in having had this type of treatment. I had it at a very prominent Clinic - she happened to be the first doctor I saw there and she put it all down as psycosomatic and sent me to a psycharist - who disagreed with her - by the way. She wrote for them to not do any other testing on me because it would cause me to act out my illness even more and there was nothing wrong with me. I fortunately, got sent to a very, very good pivotal doctor who ignored what she said and tested me from the tip of my hair to the tip of my toes. I was there over 3 1/2 weeks. The very last test done on me was a tilt table test and it was confirmed that I had POTS. So, I went back and asked this doc to remove from my records what she had written and explained that everything had been explained with testing what my issues are and that the diagnosis fit - POTS, EDS and autoimmune issues. (Didn't have the MCAD diagnosis yet.) Do you know after a whole lot of back and forth and letters - she refused to do that. So, they included my letter and notes in my files and every thing, that she said, that I disagreed with was marked on my records for the doctors to refer to my rebuttal letter and letter of disagreement.

Even the case worker who was going to bat for me, seemed to be in shock. Over 16 doctors said otherwise and this one doctor stood her ground. I found out why later. She was writing a paper to be published on her ideas of who would fit into this box of the illness she wanted to be famous for. She had decided that anyone with our POTS symptoms fit into her box. She had written in her paper to not do further testing on those with these symptoms. Later, after my fighting with her - she went in and changed her paper to not say that and said that there could be other illnesses that could come into play with these same symptoms. I'm still mad - even telling you about it. But, don't think you're the only one. Thank goodness, I'm articulate too and boy did I state my case. They are just ignorant and they seem to enjoy being that way - if it means making a name for themselves.

Move on and forget it. Don't go back there. There are other doctors who will care and who will listen and TRY to help you. We've been there, you'll survive this. Don't let it wreck you. You know stress makes us worse. Hang in there - it's just a stepping stone to make you a stronger person. When you look back on adversity in your life - you will be able to find lessons in everything and if you try to find the good in a negative it will allow you to grow as a person. Chin UP - tomorrows another day.

Issie

[yogini]

Most drs can only deal with things they know about that fit in a neat little box. It takes a special doctor to break out of his/her usual routine and take time to learn about a rare condition like POTS. It may not be any comfort, but the way they treat us often reflects their own inability to acknowledge that they might not know something. I hope you can find another, better doctor in your area that can help you. To this one, good riddance!

[jangle]

Issie that is horrible. I'm glad you had a doctor to stick up for you and to do the tests that were needed. Imagine if you never had that doctor. I mean I can think out of all the hundreds of thousands of people who have this condition, there is probably many people who are living with POTS right now who don't know about it and have accepted the diagnosis of anxiety like I did. My heart feels most for those people, because they don't even know there's something wrong with them and they're just suffering and really have no sympathy because no doctor really knows they have POTS.

I mean if I didn't look up my symptoms and really spend a lot of time searching, I would never have found POTS and diagnosed myself (well and also getting referred to TTT- but only after I told them about my HR increase). I'd still be thinking I was just having anxiety right now.

[puppylove]

I'm so sorry that happened. He sounds just like many doctors I have gone too. I don't understand why most of them are like this... I really don't get it. Are they lazy or they don't understand it? Then why can't they educate themselves on it? We all can. If I was a doctor I would want to have a challenge and potentially help so many people who are suffering.

[issie]

Yeah, Jangle it was pretty bad and I was at my worst too - was having to walk with a cane and couldn't get up out of a chair and my tremors were horrible. I had been on the wrong medicines for what they thought was Parkinson's and then they thought I had multiple system atrophy. I wasn't willing to accept that diagnosis of impending early death. So, off we go to the place that is supposed to know about these odd symptoms. The medicines I had been given were making me so much worse than I should have been.

So, yes I do feel sorry for those who stop here at this point. I had enough fight in me to FIGHT and boy did I - until I got some answers. It's amazing what determination will do for you. I think there probably are a whole lot more people who have POTS and they are mis-diagnosised. My story is an example of this.

Issie

[heissovereign]

Sorry, I have had this issue with doctors for a very long time. Even had a couple of them yell at me, I had one good doctor which is the one that diagnosed me, after 18 years of doctors telling my parents and I, that I just wanted attention. Ugh! Well now my good doc moved away, and now the cardio I have doesn't take anything I say seriously. Like lemons said they are ignorant and most are too prideful to hand our cases off to someone that can actually help. Which is why like you I do my own research until I can get to vanderbilt, lol I always tell my husband with us paying out of pocket we should at least get our money worth. hang in there

[potsyturvy]

I finally quit going to my primary doctor because he didn't believe I had POTS. He kept blaming it on depression, even after several psychologists he sent me to said I did not have depression. After he started telling the doctors he was referring me to that it was all in my head, and they wouldn't even read my test results from other specialists, I finally found a new primary doctor. Thankfully, I have found some good doctors now, but it has been a long hard journey to find them. I hope you find some good ones soon too! And don't take this appointment to heart too much. I think some of these doctors are just too cocky to accept that they don't know everything.