Stardust

Hi @EveB! Thank you so much for taking the time to write such a thoughtful response. Sorry that I didn't reply sooner; the past couple of days have been particularly miserable. I definitely have more symptoms! lol I left a lot out to try to keep the post shorter. I've definitely been having those "Aha!" moments and I'm really hoping to try to steer my doctor toward them too. My I really like my primary in the few times I've seen her, I just hope that when I come in with something this "big" that she doesn't dismiss it all. I've definitely gotten referrals from her before for other stuff so I'm hopeful but very nervous. I'm sorry that you also had to have such a runaround with them but I'm glad you finally got some answers! It was well earned. It's funny because with their limited time I always felt like I'd be more helpful by just presenting a list of "here's what I experience and why I think it leads to this," but I'm going to try really hard not to do that. lol I did mention in my request for an appointment what I wanted to discuss (and used diagnosis names), but hopefully that will just get the ball rolling in her head while she's hearing all the symptoms. I'm going to have to learn to be pushier like you did. I don't look forward to it. 😩 Then again, maybe I'll get lucky and she'll just refer me out! I was planning to bring her the contact info of one of the more local dysautonomia specialists and ask that if she doesn't want to refer me to anyone else or look further could she please just refer me to them instead.

@Pistol I'll have to see if I can find an affordable one, but I'll look into it. Thank you for the idea!

Thank you for this! I don't actually have anyone more knowledgeable than I am to help, but my partner was trying. It was difficult because it was almost as wide as my arm is long and it kept sliding down even when it was tight enough on top. Turns out that the product listing was wrong about its size and it was too small anyway. I was trying to stay as still as possible, though. Thank you for the input about the pulse oximeter too! I'll have to see what I can find.

@Sarah Tee Sorry to bother you again! I did manage to get a BP cuff and try it. Unfortunately it had constant errors and we thought it might just be defective but in looking in reviews of others on Amazon it seems that all of them are wildly inaccurate. I'm also plus sized with upper arms larger at the top than bottom (and right between cuff sizes). I planned to get a larger one next, but I can't afford one of the more expensive ones so I wasn't sure what might be the best option. Would one of the fingertip pulse oximeters even be worth trying or should I keep trying to get a BP cuff that works for me? I was hoping to have some readings to give my doctor before my visit in a week and a half but at this rate I'm not sure I'll have any. 😕

Thank you so much! I actually have been watching a lot of those and they've been great.

That makes sense... Still so dumb though. I'll never understand why an insurance company gets to have any say over a doctor's recommendation (at least here in the US). 🙄

It's almost like we just have to keep poking them to Please Do The Thing.

It sure seems like persistence and nudging with the "threat" of going above them really helped! The whole thing is so frustrating. I don't understand why it's so hard to just get tests because like you said, you can't know what you'll find until you try it.

@MikeO Seems like most of us go through so much with them, doesn't it? 😔 So weird that she didn't want you to provide any more data; like does she not want to know new things and help more people? It sounds very frustrating, I'm sorry you had to go through that. But I'm very glad you've got something at least and are on the right track! I'll probably bring up the OGTT you mentioned too. Can't hurt to test more things, that sounds better than not testing anything! Thank you again for your input!

@MikeO This is really specific advice and that's incredibly helpful for me, so thank you so much for taking the time to write that out! I did mention suspicions in my appointment request but in my experience the doctor doesn't even look at that anyway. I'll try to avoid specific names and just mention symptoms (without being too namey about it lol). I have a BP/HR cuff coming today that I can use so I'll definitely do that. I'm a little worried that I may not quite meet the criteria for POTS because in my own test with my watch (which is less, accurate, I know) while my HR did go up by well over 30 bpm (and over 120) it seemed to last about a minute and go down. I know an increase is normal but 30-50 seems like a bigger jump than it should be, regardless of if it stays that way the whole time. But who knows, maybe it'll change with the cuff. I'm already on atenolol (for migraines) which obviously lowers my heart rate, I drink water nonstop and my diet is (IMO) quite salty. I'm far worse in the mornings, and I did this at 5pm so maybe I'm just too well compensated to see a more striking result. lol (In case it comes off that way, I just wanted to say that I don't want to be sick. I believe I am sick and dysautonomia in general (and much of POTS) explains just about everything I experience when nothing else has. With POTS not being taken very seriously as it is I'm worried that other dysautonomic disorders are less likely to be considered. So I'm not hooked on one diagnosis, I just want to know what's wrong with me! Might end up having to fight my way to a specialist if I can find a way to afford it.)

Thank you, I might have to try that!!

@MaineDoug Thank you!! 💙 Hoping I'll be blessed with the latter lol

@MaineDoug That must have made things so much easier after that point, lol "Look what I can do!" I'm a little worried about symptoms not showing up while being tested to be honest - they're better or worse depending on the day. Sometimes they're awful and sometimes I'm okayish. Wish they could just follow me around. lol But I'm taking the advice of another user to get a blood pressure/HR cuff and keep a log! Thank you so much! Again, I really appreciate the validation from you guys.

Thank you so much!! 🥰 That means a lot. lol that's a great idea! Easier to say "What symptom don't I have?" 😂

Craving salt and crossing legs all the time are related too? Another thing to add to the "apparently I've always had been this way" list. I do have a ton of symptoms but I was going to try to make it slightly less overwhelming by putting them in a bullet-pointed list by category. lol Thank you so much for the advice and encouragement. It really helps to hear from others that it's not all in my head, 💜