jangle Posted September 13, 2012 Report Share Posted September 13, 2012 So I called around my area, and one of the doctors mentioned that she treats POTS patients nearly everyday. I find that difficult to believe given my experience with other physicians I would say 75% of whom haven't heard of POTS prior to my coming, and the rest have maybe heard of it, but haven't really dealt with it.Could this really be true? Am I getting my hopes up? I'll withhold my excitement until I actually see them. Quote Link to comment Share on other sites More sharing options...
futurehope Posted September 13, 2012 Report Share Posted September 13, 2012 What is this doctor's specialty? When you spoke to the office, did you speak to the doctor himself or the receptionist? Did you ask about the doctor's experience with "postural orthostatic tachycardia syndrome", "dysautonomia", or did you just say "POTS"? The answers to the above questions would help me know whether this doctor and you are really discussing the same thing.There is some sort of a POTS diagnosis that has to do with tuberculosis. Quote Link to comment Share on other sites More sharing options...
jangle Posted September 13, 2012 Author Report Share Posted September 13, 2012 What is this doctor's specialty? When you spoke to the office, did you speak to the doctor himself or the receptionist? Did you ask about the doctor's experience with "postural orthostatic tachycardia syndrome", "dysautonomia", or did you just say "POTS"? The answers to the above questions would help me know whether this doctor and you are really discussing the same thing.There is some sort of a POTS diagnosis that has to do with tuberculosis.I said "POTS" and "Dysautonomia" and I spoke to the receptionist who then spoke to the doctor. So I don't know.I'm wondering if anyone has ever had that experience? (a local random doc being an expert on POTS) The doctor's specialty is a neurologist.But even still, I've seen neurologists in the past, many haven't heard of POTS, and the newer doctors seem to know just the basics of it, but not really much. Quote Link to comment Share on other sites More sharing options...
roxie Posted September 13, 2012 Report Share Posted September 13, 2012 I've seen dr's who have heard of it and who know the basics of it but aren't experts. It's not going to hurt to go to her & see what she says.Keep an open mind but dont get your hopes up SO high that you think you'll be cured. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 13, 2012 Report Share Posted September 13, 2012 It's hard to believe... but I'm jaded. I wouldn't get my hopes up and then if she is great, you can be pleasantly surprised! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 13, 2012 Report Share Posted September 13, 2012 Well, if she IS good, please PM me who it is, as I believe you live only 1 state over from me(unless my memory is wrong, which very easily could be!) Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted September 14, 2012 Report Share Posted September 14, 2012 Have you come up with anything in searches for her name on the internet (rateyourMD kind of sites) or on here (dinet)? If she really does see that many POTS patients, you would think that she would be discussed in the various POTS circles (especially if she is good). I agree with others who've said to be cautiously optimistic. Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 14, 2012 Report Share Posted September 14, 2012 Seems like the receptionist would know if a doctor saw that many of a certain type of patient, but maybe she was new. Hard not to get your hopes up though when there's even the slightest chance you might have found someone who might be helpful. Good luck!! Really hope you've found a gem there!(FWIW- POTTS disease is TB of the spine. A lot of older docs, especially pulmonologists, think you're talking about this problem when you say POTS. ) Quote Link to comment Share on other sites More sharing options...
yogini Posted September 14, 2012 Report Share Posted September 14, 2012 I think you're right - most neuros (other than autonomic specialists) don't know much about POTS. And there probably arent too many drs around that see POTS patients every day other than Dr Grubb, Low, etc. On the other hand if the receptionist is saying so, there is at least some hope. How did you find out about this Dr? There is a DINET dr list which you could check, or check the forum to see if anyone else here knows her Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 14, 2012 Report Share Posted September 14, 2012 Hey jangle,I do have a neuro that sees POTS patients everyday. That (and migraines) is his specialty. I would just say this...he is a POTS specialist and he is very on top of the most recent research, theories, and treatments, but, since I am one of the people in that 25% of POTS patients that don't either grow out of it or eat more salt and drink more water and get better...seeing him isn't a miracle. He is working on my issues as we go to try to minimize my symptoms and keeps track of what is going on with my other doctors. He's really good about giving me guidance on what other leads to track down with other specialists like the immunologist. I guess my point is, even if this doc sees POTS patients every day, some of the more complex POTS cases (which I think most of us that have been around here for a long time are) just are not that easy to manage no matter how good the doctor is. Its worth seeing the doc if you think they are legit, just don't get your hopes up that they will have some bit of information that the other POTS docs don't have.Hope it works out,Katie Quote Link to comment Share on other sites More sharing options...
spinner Posted September 15, 2012 Report Share Posted September 15, 2012 The few family docs that know about Dys have a barely functional comprehension of it. My own did a pulse check laying, standing and said "youre good to go". LOL, later I had a cardiac event with wildly fluctuating Bp and PVC's, and before then a very low pulse rate that required ER work.So when they say "i know pots" they may very well mean "im aware of heartrates going up and down" and thats about it.Theyre NOT experts or specialists. And they could no more "treat" you correctly than throw a 100 mph fastball. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.