"forcing" My Docs To Treat Me Here In Colorado

[Beccapooh]

I've called and made two appts for the same time with both of my docs (Neuro and PCP). They just happen to be two doors down from each other, in the same building, so it will be convenient.

I can't seem to find anyone here in Colorado that has a clue about POTS and all the other docs around the country are either not that knowledgable either, booked through next year or are just too far away to be feasible for me to see. So, I'm going to try to make my doctors learn as the go and treat me. Why can't they do that right? I mean, they ARE doctors afterall and there are sites made for them about everything out there. Heck, half the time, when I do a search on POTS the articles that come up are obviously written for medical people. I'm very bright, but I have a hard time getting through all the jargon. So, with that, couldn't they search these same sites and learn about it and treat me (to some degree)???

What chance do y'all think I have of this working? Have any of you tried this tactic? How did it go? What do folks like us do, when we have a condition that no one in our entire STATE seems to have a clue about? How can THAT even be possible??? In this day and age??? In this country??? I mean, seriously.....this disease isn't that uncommon, is it??? I can't be alone in Colorado with POTS, right?

I'm stressed, I'm feeling bad today and I just want to think that, someday, this all might get better!!!!!!

Rebecca

[goldicedance]

Rebecca...I just saw my cardiologist for a check up and probably my last appointment before we relocate to Florida. He actually thanked me for being his interesting patient--he learned alot about POTS and understood the rationale for various treatment modalities. He kept a very open mind. He found Dr. Grubb's latest article very helpful.

Perhaps you can find a cardiologist who is a generalist and who keeps an open mind.

Good luck,

Lois

[stellakitty]

Hey!

I live in Colorado as well, but I'm quite aways from you. There used to be a really good doctor over at National Jewish whom was researching CFS, he is the one who finally put the pieces together and daignosed me with POTS. Alas shortly aftere diagnosing me he left for the CDC in Atlanta. My mom and I haven't had too much luck finding doctors... My pcp is really good (not taking anymore patients), and we found a GI guy who claims to see all of the dysaut. patients in the area (he knew what we were talking about), as well as a pulmonologist (she's pediatric, and we don't see her very often). Typically we have to travel out of state... For the decompression we went to Milwaukee, and I've seen Dr. Grubb twice. I know that you've said that you don't really have the money to travel to see someone out of state, but that might be your best bet. Unfortunately Colorado isn't really known for their excellent doctors!

Alexa

[Dawg Tired]

I was living in Montana when I got sick.... I ended up coming home to Missouri!

There was a doctor listed on a different website who was supposedly familiar with this condition.... but he must have been kidding!!!!! He let me know it was all in my head.

[Lukkychrm42]

I He let me know it was all in my head.

My, but that was thoughtful of him!

I saw a cardio in Boulder who diagnosed me- I don't think they knew much about POTS, but they might be better than nothing.

Dr. Holland at Boulder Medical Center.

I go to CU, and I need to find docs for when I return for my final year. Eep!

Good luck!

[Beccapooh]

Thanks Megan. I'll wait to see what my docs say on Monday and then, if need be, I'll contact Dr. Holland and see what he says. I live pretty far up North in the Metro area, so Boulder is not out of the question at all. Heck, right now I drive all the way to Parker to see my PCP and Neuro!!! That's way further than Boulder is.

I've also gotten some PM's from someone else who lives in Colorado and I might give them a call tomorrow!!! I just need to know what we're doing to get treatment in Colorado, I mean, really?!?!!!

I can't even imagine trying to go out of state every time I needed a little tweek here and a little tweek there. I see my Neuro all the time for the MG stuff.

Thanks again, for everyone's supportive replies. I'm having a horrible day today and I can't seem to keep my train of thought going very well. So, sorry for the abruptness of this post.

Rebecca