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POTS--WHAT TO EXPECT AT FIRST rhematalogist appointment???


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Good morning. I'm so glad I found this website! I'm seeing a rhematalogist on Friday. I'm really nervous about what I should say besides my symptoms & showing her clinical from 2012. It's old but at least she can see which tests were ordered & the clinical impression. I don't want to forget anything so I'm writing questions to ask based on my research but I'm all over the place! I say that b/c I don't know how to CONNECT THE DOTS! I need to learn how to manage this. I have a pacemaker (for complete heart block), POTS, PVCs, GERD, anxiety, depression, & ADD. I take meds & see a therapist. I think I may have the "brain fog" I've seen you guys talking about. My psych meds help a lot but sometimes from a BRAIN CHEMISTRY standpoint something is off. I sleep better then I used to thanks to melatonin. I dream a lot so I know I'm getting more REM sleep. Do they ever order sleep studies?

I was diagnosed w/ POTS in 2012 by an EP. He said I have venous pooling & PVCs & put me on Bystolic. That medication worked well b/c I was lightheaded a lot when I worked on my feet. He said to wear compression stockings but I never did once I saw the price tag!

He recommended that I increase my sodium & potassium levels. I drank tons of Gatorade but I find is disgusting but I found a GREAT alternative drink called Ultima Replenisher. I buy the 90 serving canisters. I recommend the ORANGE, RASPBERRY, & LEMONADE FLAVORS. $35 on Amazon. I buy 3 at a time but that will last almost 6 mo so it's worth it to me. I drink 4-5 bottles a day. ($.33 per serving in 16 oz bottle of water) https://www.ultimareplenisher.com/product/orange-90-serving-canister/

Basically I never took it seriously until the past year & now I feel that it is the "key" as to why I feel miserable sometimes. I don't do the exercises, wear compression stockings. I'm bad lol. The EP I have now d/c the Bystolic (I took it to help control PVCs) b/c I was complaining of constant shortness of breath. I had gotten an office job so once I was off my feet we determined that although the Bystolic helped to control my PVCs, I didn't need it once I wasn't working on my feet all say. He did a full cardiac workup including a stress test & echo & determined that the Bystolic was causing the SOB. I've been seeing this dr for 5 years. He's amazing & did my pacemaker replacement surgery. The EP that diagnosed me w/ POTS runs the syncope clinic at the Cleveland Clinic (heart center) BUT. ONLY sees patients in the syncope clinic. My best friend from Texas saw him & loved him. She doesn't jave POTS or dysautnomia but has an extremely rare heart condition & still has difficult despite multiple open heart & pacemaker surgeries. I'm extremely lucky to have the Cleveland Clinic in my "backyard." For those of you that are unaware, the Cleveland Clinic heart center has been ranked #1 in the nation for 27 years. 

I highly recommend Dr. Jaegar if you're constantly lighted &/or passing out. Patients usually come to him after being blown off or told "nothing is wrong w/ you." HE TAKES EVERY PATIENT EXTREMELY SERIOSLY & YOU'LL GO THROUGH A BATTERY OF TESTS BUT I'D BE SURPRISED IF HE DOESN'T HAVE AN ANSWER FOR YOU ONCE HE GETS  THE TEST RESULTS. https://my.clevelandclinic.org/staff/620-fredrick-jaeger

So, I'm not sure what to expect. I know she'll order a bunch of tests but what questions should I ask? I have my old clinical & test results from 2012 when I was first diagnosed. I figured even though it's old info she can still see what tests were ordered & the clinical impression. 

Thanks!

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Hi Kelly, welcome to DINET. 

I found a website that describes what to expect. This is an arthritis-based site but they have a thorough description of a typical first visit for anyone visiting the rheumatologist--what you need to bring, what will happen, etc.
https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/

I am currently going through similar but am seeing a new GI doctor. At our first visit we arranged for her to get copies of all my old tests--not the opinions of the results but the actual tests--so that she can form her own opinion to determine where I am now compared to where I was then. I have a round of testing coming up at the end of July so it's logical to establish some sort of timeline as to progression of that which is better and that which is worse before creating a new maintenance. I wish you good luck at your visit and that it goes as well as it can.

 

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