Follow Up Visits

[surfgirl14]

Hey Guys. I was wondering how often I should be going to follow up visits with my doctor who treat my POTS? They never tell me to make follow ups and never check on me. The only time they call or anything is when I am have a flare-up. Also I am on Flourinef shouldn't I be having my sodium levels checked occasionally? I feel like I am not being monitered like I should be. Should I be having follow-up visits? And if I should who should I be following up with? Thanks.

[Brye]

I see my doctor every 6 months, more often if there is a problem. I also have my potassum checked every 6 months. I take florinef and a potassium supplement. Surprised they don't schedule frequent follow ups for you.

Brye

[sandymbme]

I see most of my specialists every three months. Some are a bit more spread out if I am stable, but as I rarely am, that rarely happens!

Sandy

[surfgirl14]

Ok Thankks. Yea I don't ever schedule follow up visits. I am now going to Duke Childrens and am scheduled for some testing, but thats about it. I have asked to do IV hydration because it really helps me but they just push tht aside. It's not like I want to go to the doctor every day, I just want to feel like someone actually cares about my health and how I am doing. Also it makes me feel a little bit frightned to be on all of these meds with no one monitering how I am doing on them. My heart rate still goes up high, and sometimes my blood pressure gets extremly low when lying down

[potsgirl]

I have follow-up visits every 3-6 months, depending on my condition. How low is your blood pressure going? I think you probably should be having check-up appointments every 6 months at least, and that's if you're stable. I think I might ask my doctor about this - why he isn't following you more closely. You are certainly entitled to know what your doc is thinking!

[surfgirl14]

Hey potsgirl......sometimes it will get as low as 70/48. It usually stays 90/60 which is fine when I am laying down. But sometimes it gets really low. Also the medicine is supposed to be helping with my heart rate and I have seen some improvement but not enough. It still gets up to the 130's-140's , but when I get bad it gets up to the 150's. I know a lot of POTS patients are way worse then that, but that is just me at my worst. I would say my condition is not as severe as a lot of people, but it does get really bad when I have flares. I am currently in remission thanks god (knock on wood) But I just wanted to see if I sholud be having follow up and sort of things like that. It is weird that they do not follow me more closely. I also was intersted in Vitaman B shots......do you know anything about that??

Thanks for the comment much appreciated

[Katybug]

My POTS spec/neuro sees me every 2 months and my cardiologist said she would see me on the months that I do not see the POTS guy. She felt that someone should see me every month until we get a good treatment plan going that is working for me. She said we would back off after that. I think the POTS guy sees his patients that are on a treatment plan that is working for them every 3-6 months depending on what meds he has them on.