TOSam25

Hey Jesse,

Yes the same Dr. I haven't gotten in for sure yet, I finally got all the other tests they needed and just faxed it all so I am waiting for a reply....

I was told that swimming is the best for POTS people, from what I have read and been told that is, but I haven't tried it yet.

I have both a Nerologist and a Cardioloist that work together to help me with my POTS. They talk to each other all the time and work together towards a plan for me, I think you may need to get one involved with you sometime down the road.

Anyhow...just thought I would give you my two cents...

Sam S

TOSam25@Hotmail.Com (i have msn too)

Hi Steph from OR

Yes I will start slowly with excercise. Swimming makes sense because the water pressure probably helps a little and you don't overheat as easily. I really haven't been exposed to warm temps since I got POTS but I see how that would not be fun. Luckily I live by the ocean so it doesn't get terribly hot.

I have an apmt with a neurologist in a couple weeks. My Mayo doc told me to see a neuro not a cardio so I thought I'd start there. I did get a referral to an EPS cardio from my local GP... but I didn't make an apmt... because.... I'm dumb I guess?  It's OK to have two apmts yes? Especially since there's a month wait for a specialist. And I'm not even sure if the neuro knows anything about POTS. Sigh. Guess I have some more calls to make.

No I don't know my blood count (blood volume?). I haven't seen a doc since I got back from Mayo. The beta blocker may me feel worse so I'm just doing salt, fluid and walking. I don't know if I'm hypovolemic or veins aren't constricting or what in particular is causing my POTS.

FMLA is a federal law yes? Well, according to FMLA gov page

an employer is only required to give 12 weeks/ year total but you can use those 12 weeks intermittently. There is also a similar CA law: CFRA The California Family Rights Act. I didn't get into all the details of these. I'm not worried about my job now because I'm working more than 1/2 time and my boss loves me.

Thanks,

Jesse

<{POST_SNAPBACK}>

Hey Jesse,

I am 25 and was also told I have POTS around the same time in Feb of this year. I was reading that you will or might be going to NY and getting 300 bucks towards it, I am going to be doing the same thing I think, is it with the new york medical college too? Just wondering...

Sam S

Hi (Steph)

Happy Birthday! I'm 27 too for another month. Hope you had fun. So you like to partake huh? Maybe it's you who has gills!  I do too on occasion but now it seems that I 'pay' twice as much as I did before

Well, I survived work ths week. I didn't get in before noon but at least I made it. I actually got some work done too.  Everyone says it looks like I lost alot of weight but I didn't lose more than 5 lbs. I'm pretty skinny to start with though. I guess you are too Steph- saw your pics. Thanks for sharing. I'll post when I find a decent one of me. Did you lose weight from POTS?

You're right about my GP- I was disappointed. I hope the neuro can help me. It sounds like you hit the Cardio-Dysfunction Jackpot Steph  I guess that just means there's more room for improvement  Good luck with your docs. So what is your situation? You're Procrit is working for you but you still need better docs? Are you working at all? You had to quit before right?

I emailed the doc that's running the POTS study at syncope.org to see if I can do it. I think it could help me figure out how to treat my POTS. It's all the way in NY but I think I can handle the flight ok now. And they actually pay you $300 

My ADD med will probably exclude me from the study though and I don't want to stop it again. We'll see.

Getty Center! Sha! Whatever. I like rock and roll but come on. How about Staples Center? 

Well, I must get to bed... so tired because the movers came at 7:30 for my roommate's stuff. She's gong to AZ. I have the place to myself for 3 mo. max and then her new job stops paying her half of the rent. Do I find another rommate, get my own place or move in wtih someone??? More stress! More tachy 

Have a good weekend

Jesse

<{POST_SNAPBACK}>