[Hydrophobic1212]

This is really just a big venting session, so I understand if no one reads all of this. Ha, ha.

I have been having ongoing health issues since January 15th, and have been off work just as long. We found out my heart rate jumps up high whenever I move from laying down/sitting to standing. I had a cardiology appointment today as well, to check in on this because my psychiatrist thought I had POTS.

So, this appointment was SO, SO, SO CLOSE to being an utter failure. I get in, get the EKG and my vitals taken. Resting was like, 100 or something, because I'd been out and about, walking a lot with my mom earlier to exasperate my symptoms. Even though my main complain was possibly POTS or having it associated with standing and laying down/sitting, they didn't test for it right off the bat. Doctor comes in, looks me over slightly, and says "We are at a difficult position, because all your tests come back normal... So it could be that your body is getting anxious over the symptoms, and the only way to treat it is if you exercise to get your heart rate normal as well as drink a lot and train your mind to know that it isn't going to kill you." I WAS SO PISSED. We had been through this, there IS something going on, and I've SEEN IT DOCUMENTED.

So, I finally spoke up, and told him that it wasn't what he was saying. He was saing it was something like 'sinus arythmia' or something of the sorts. That when you breathe in and out, it gets worse. But that's not the case. I'm totally fine laying down, and the moment I mentioned POTS, he said it wasn't, because I had the holter done and it didn't show it. But I KNOW the Holter monitor doesn't show it at all sometimes, if at all. He was going to just say 'exercise more and drink more, it's all you can do' and leave it at that, saying nothing was wrong. So I kept insisting that it ONLY happened when I stood and when I sat down/laid down. That it changed with my position, which was why my psych was very insistent it might be this. So, he pauses for a moment then says he'll check my vitals laying and standing, so he leaves and the nurse comes back in.

We realized after we left, we think he left to go read up on POTS and my condition, because doctors don't know too much about it off the top of their heads.

While we wait for the nurse, my mom starts going "Well, perhaps you really are just out of shape and it's nothing more than that..." and starts agreeing with the doctor because I was angry as hell. EVEN THOUGH IT TOLD HER SPECIFICALLY that POTS is incredibly difficult to diagnose and that this is what always happens. Doctors are reluctant to diagnose it, and she STILL does this. Doctor's don't know everything.

So, we finish with the nurse and resting on my back, heart rate was at 100 (because I was so riled up and wasn't fully laying on my back, just partially propped up) but the moment we have me stand up, it was at 123 bpm. While it isn't dangerously high, it still jumped by a lot, and they were able to see it.

So, he comes back in, and totally changes course now, saying that he wants me to do a cortisol test to see my levels for that, as well as see an endocrinologist to see what they think, because when I had my pancreatitis, all of my lymph nodes were very, very swollen so he was concerned about that. HOWEVER, I bring up POTS again, just to justify what my psych said, and he goes, "Well, hopefully it isn't POTS". So, he went from saying it wasn't, to HOPEFULLY it wasn't.

And NOT ONLY THAT, he goes "Well, we don't really need to do a tilt table test, because what we did in here can easily diagnose POTS for you." But he's wanting to check everything else out, it seems, to make sure it's not another cause. He was going to start me on the salt tablets, but called us soon after saying he was sitting and thinking about it, and decided not to do it just yet, as if it's not going to help, it can actually make it worse. So he didn't feel comfortable having me take them until we have more to go off of.

Still no work either, so I have to go back and talk to my job tomorrow and finally at this point, tell them that I understand if I cannot be held as an employee anymore, and go from there. It's very upsetting, because I love this job, but it's too hard to do at the moment. It makes my symptoms 10x worse.

So! That's what happened today. x.x

LONG STORY SHORTENED :: Basically, I've been sick for awhile, my parents believed me, kept trying to tell my mom that it's hard to diagnose something like POTS, she kept saying she agreed, went to the doctor he said it wasn't and said I was totally fine even though my heart rate jumps really high when I stand, mom agreed with doctor I was just out of shape, finally they tested what I'd been saying, saw for themselves and now there's more testing. However, mom agreed with the doctor, despite all I kept telling her. Now I need more tests and have to remain off work until I feel well enough to try again.

[Perna]

Sorry you are going through all that. It can be so frustrating working with lots of doctors on vague illnesses they don't understand well. I read the NIH page on POTS Postural Tachycardia Syndrome sounds unpleasantly scary. I'd start drinking the water, eat more salt, see if I could help myself.

[healingme4me]

So sorry you are going through all of this. It's a good thing, however, that they were able to literally see something on your testing. The rest sounds like a differential diagnostic procedure to get you a final diagnosis. (differential = dot i's cross t's, make sure there's nothing else, it possibly can be; common with various illnesses(ms alike))

[Hydrophobic1212]

If this is POTS, it's not scary anymore and if I find out it is that, then I won't be frightened as I am now. As it's not a solidified diagnosis, I'm still scared it something worse, when I really fit the bill for POTS. It's just the waiting that is scary. He was going to have me take salt tablets, but he called us back and decided that he wanted to wait until we got a few more tests, as if it were another problem, taking in more salt can do more harm than good. He was actually a very good doctor, and as POTS is difficult to understand fully or diagnose, I see why he would be hesitant to believe something IS there when I look normal otherwise. Well, until we did the testing between sitting and standing.

And yes, my mom wasn't fully understanding and that's what I told her as well. Everything I've read about POTS, is you go through the testing 'dance' where they test you for tons of other stuff, just to eliminate other possibilities (for me, I had pancreatitis back in October and I'm only 20 now, with A LOT of swollen lymph nodes, so he's wanting to check my hormones and see if something is wrong there). But, this is typically what happens to those with POTS, where they test you and eliminate everything else before settling on that diagnosis.

Thank you both for the support. It has been a very difficult past two months.