Cardiologist Nightmare

[SeattleRain]

I saw the cardiologist I've seen multiple times since July. He's seen my condition get progressively worse.

He told me 3 months ago that "after 3 months if you're still feeling bad, we'll do a bunch of tests" and laid the "you're just out of shape, start exercising more" line on me. (This was after I was doing high intensity interval cardio, sprinting at full speed on and off for 25 minutes - hardly "out of shape").

Today I saw him regarding blood pooling in my legs, which I'm convinced is happening because:

1) My legs turn purple when I'm standing up for any period of time, such as taking a shower.

2) My legs feel full of pressure after about 30 minutes of laying down

3) I'll get occasional pains in my legs when this happen

4) They do look slightly larger after a while of this feeling

5) When I stand up, it feels like my heart is starved of blood and struggles to beat.

6) When I lift my legs above my head before standing, the above symptoms are nearly completely reduced! (HELLO!)

He argued that blood can't pool in legs like that, and that if blood was pooling in my legs, it takes days to go away (I guess the doctor's articles I read online about lifting your legs above your head are all wrong?)

He disregarded all of my symptoms asking me "well I'm not sure what you want me to do about it" and when asked for an explanation regarding standing up and symptoms, and why lifting my legs above my head would help reduce them - his answer was "I don't know". Then went on to suggest that "maybe there's some joint pressure being relieved when you do that". Joint pressure? Why would joint pressure make my heart feel starved of blood?

He referred me back to my general doctor, who already referred me back to my cardiologist the last time. My GP is just going to refer me back to him. I told him that, and he looked at me like an idiot and said "I don't know why he would do that...." - Maybe, possibly, because it feels like a problem with my HEART? Put 2 and 2 together, man!

So I argue about the blood pooling in my legs, and he sarcastically suggests I lay down for an hour if I don't believe him. I say "Okay, I'll do that!".

He puts me in a room, tells me he'll check in a few times then after an hour he'll look at my legs.

After an hour and 20 minutes I call his office to have them remind him I'm still waiting for him.

After an hour and 40 minutes I just got up and left.

There's nothing more annoying than a doctor who makes it obvious he doesn't care, he doesn't understand how you feel and on top of that, doesn't even show up when he says he's going to.

If the GP doesn't lead anywhere useful I'm going to a good neurologist another member here recommended, and hopefully get a TTT or something.

Thanks for hearing me vent!

[MomtoGiuliana]

Yikes--so sorry for your terrible experience. I hope the neurologist in your area is helpful.

[E Soskis]

Wow! What a horrible experience - I'm sorry - I've been through some terrible experiences also - I suspect we all have! I really appreciate it when a health professional simply tells me they don't know or understand what is going on - a simple "I don't know but, I'll see what I can find out" goes a long way......in the meantime, it is very discouraging and kind of makes you want to run away and hide for awhile.....don't give up - keep digging - you'll eventually find someone who is interested in helping you out and can point you in the right direction

[SeattleRain]

Wow! What a horrible experience - I'm sorry - I've been through some terrible experiences also - I suspect we all have! I really appreciate it when a health professional simply tells me they don't know or understand what is going on - a simple "I don't know but, I'll see what I can find out" goes a long way......in the meantime, it is very discouraging and kind of makes you want to run away and hide for awhile.....don't give up - keep digging - you'll eventually find someone who is interested in helping you out and can point you in the right direction

That's what I wanted to hear "I don't know, but we'll figure it out". Not "I don't know, I don't know what you want me to do about it" - that's literally what he said to me!

My GP is super nice and can tell he cares about his patients but the extent of his practice only goes so far...

[khaarina]

OMG I truly hope you don't have to go back to him. That is awful. I've had a few doctors just like that so I know how frustrating and frightening it is to have to rely on someone so inconsiderate and incompetent. After trying many doctors out, I have finally found a primary and a cardio who seem to be taking good care of me so don't give up, you will find someone too. But don't give in to this guy, you deserve better!

[SeattleRain]

OMG I truly hope you don't have to go back to him. That is awful. I've had a few doctors just like that so I know how frustrating and frightening it is to have to rely on someone so inconsiderate and incompetent. After trying many doctors out, I have finally found a primary and a cardio who seem to be taking good care of me so don't give up, you will find someone too. But don't give in to this guy, you deserve better!

Thank you for the response! I wouldn't go back to him if they paid me to!

[corina]

That's what I wanted to suggest, not going back. You need a doctor that works with you not against you. And they are out there though hard to find at times. I once left a specialists office telling him that seeing him was a waste of my time and that I had expected him to help me instead of blowing me off. At least I was the one in control which made me feel better! Later when calling my gp about this visit it turned out he had been calling my gp within 5 minutes of me leaving his office. Think he felt he needed to excuse himself!

[SeattleRain]

That's what I wanted to suggest, not going back. You need a doctor that works with you not against you. And they are out there though hard to find at times. I once left a specialists office telling him that seeing him was a waste of my time and that I had expected him to help me instead of blowing me off. At least I was the one in control which made me feel better! Later when calling my gp about this visit it turned out he had been calling my gp within 5 minutes of me leaving his office. Think he felt he needed to excuse himself!

What was he calling your GP for?

[misstraci]

That's really rude!! I'm so sorry they treated you that way. That sounds like something my doctors would do And if it makes you feel any better, my PCP and specialists all play pinball with me too, bouncing me from one back to the other and so on. I hope you are able to find you someone new and better than that guy, he obviously doesn't care or care to help you find the issues or believe what you're saying to him. Keep us posted!

[corina]

SeattleRain, he called my GP to tell him that he couldn't be of any help. That's not what they normally do as far as I know! Might be differentin my country but they normally write. I'm pretty sure that it was my walking (or rather: wheeling ) out his office that made him feel bad.

[HopeSprings]

That's what I wanted to hear "I don't know, but we'll figure it out".

Words we all long to hear. I hope you can find a Dr. familiar with POTS - that person should know all about pooling.

[yogini]

I went to a dr listed on the DINET site as a POTS specialist. He had a tilt table in his office and everything. During the TTT, my hands turned very dark purple from pooling. I asked what it was and he told me it was nothing. I think there are very few drs out there that understand all the symptoms of POTS.

That being said, it sounds like the cardio you saw doesn't have the best bedside manner on top of being ignorant. He does sound like a nightmare. You deserve so much better than that. I would definitely go to the other dr that someone else here recommended to you.

[kitt]

Sorry for your nightmare doctor. There are lots of them out there. I agree, the important thing is not to go back.

I live in a big city and couldn't find a doctor that knew about POTS. (I had to go out of town to get a diagnosis.) I made calls, talked to some M.D.'s who are friends, and finally spent about 15 hours searching on the internet. No joke. All in an effort to find a doctor here in my town.

Finally, I found a 'dead' forum where people had posted about various forms of dysautonomia. The posts were still online, but you couldn't contact the writers of the posts, and you could not reply to a thread or post a new one.

On the site a woman with IST, inappropriate sinus tachycardia, a form of dysautomnomia mentioned she had found a cardiologist in my town to treat her. She mentioned him by name. It took a long time to get an appointment with him, (his credentials are amazing), but it was worth it. He's also a board certified internist, so he gets the big picture.

He tried a new BB, and when my BP dropped as low as it on one I tried previously, he began to suspect hyper pots with MCA. (I have flushing and vomiting.)

I feel very fortunate to have found him. Sometimes the harder I try, the more fortunate I get.

Don't give up. There may well be somebody near you that will help. Keep trying and good luck.

[SeattleRain]

Thanks for the responses, everyone - it's much appreciated! A cookie for all of you

[TCP]

Sounds like a crap doctor. I saw a rubbish one who said he knew nothing about the nervous system....makes you wonder how well they are trained, doesn't it? Can you see someone else for a second opinion?

[Sam_ci]

I gave up on doctors, and forgive them. They were not trained to recognize, understand and treat POTS, speaking of which there are no treatment, other than, in MY OPINION, re-training your brain. Accidentally or not, I found out about "amygdala retraining program" ( on CFS site: http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/living-ii-mindfulness) and it all made sense to me. I watched 2 free sessions. I wish I lived in UK and could actually have a direct sessions with this practitioner. I want my life back and I can't wait to receive the material so I could start. Here is the link to You-tube sessions. First 3 are free, and he recommends to start with session #2.