Always_anastasia Posted February 20, 2021 Report Share Posted February 20, 2021 Hello, I haven't been here since my pots diagnosis last year been a hectic time. My cardiologist has ordered autonomic testing with a neurologist ..and lord knows i hate ,and don't trust neurologist at all. Currently I've had to reschedule the appointment numerous times due to no fault of my own. Appointments were scheduled months in advanced, but its oh we cant see you because you're taking this medication, or i dont see this appointment on the schedule even though i was sent reminders for it..and now that im scheduled i don't have confidence in this appointment or the doctor. I'm not even sure what autonomic testing is or what its supposed to find . I've been trying to research on my own , but i feel like i might be psyching myself out at this point . Can anyone tell me what their experience was with autonomic testing? What do the drs look for ? What are the tests like? Can you pass fail etc ? Thank you 💕 Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 20, 2021 Report Share Posted February 20, 2021 Hello @Always_anastasia - I had autonomic testing done many years ago, before I was diagnosed. It was at a mayor autonomic clinic here in the US. They hooked me up to an EKG an other sensors and had me stand until I could not take it anymore. I remember my heart pounding after a while and that my feet turned blue. However - they said the testing was normal. Prior to that testing I had a TTT which showed NCS ( at that time ). Since the autonomic clinic was not able to help me I went to another specialist who diagnosed me on the spot with HPOTS, he checked my adrenaline levels just to confirm and they were high. There are other autonomic tests they can do, I am not sure what your neurologist will test. I would not worry - the testing is not uncomfortable. You can find more info here: Autonomic Testing for Dysautonomia - Dysautonomia, Disorders, Diagnostics & Info - Dysautonomia Information Network (DINET) Good luck with your tests! Quote Link to comment Share on other sites More sharing options...
Always_anastasia Posted February 22, 2021 Author Report Share Posted February 22, 2021 On 2/20/2021 at 3:24 AM, Pistol said: Hello @Always_anastasia - I had autonomic testing done many years ago, before I was diagnosed. It was at a mayor autonomic clinic here in the US. They hooked me up to an EKG an other sensors and had me stand until I could not take it anymore. I remember my heart pounding after a while and that my feet turned blue. However - they said the testing was normal. Prior to that testing I had a TTT which showed NCS ( at that time ). Since the autonomic clinic was not able to help me I went to another specialist who diagnosed me on the spot with HPOTS, he checked my adrenaline levels just to confirm and they were high. There are other autonomic tests they can do, I am not sure what your neurologist will test. I would not worry - the testing is not uncomfortable. You can find more info here: Autonomic Testing for Dysautonomia - Dysautonomia, Disorders, Diagnostics & Info - Dysautonomia Information Network (DINET) Good luck with your tests! Thank you for your response. That is my fear that everything will say normal. Of course if you aren't experiencing symptoms that sounds like a wonderful thing. But my symptoms are experienced daily,and are all over the place. I have no trust or confidence in this Dr,and that might be making things worse. I almost want to cancel my appointment 😭 i guess it's just my anxiety. Thanks again for the resources and response, i really appreciate it 🙂 Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 22, 2021 Report Share Posted February 22, 2021 @Always_anastasia - please don't cancel! If you are symptomatic then most likely it will show something. If the type of POTS can be narrowed down by the testing then that could lead to exploring other meds, which in turn could really improve your symptoms. Quote Link to comment Share on other sites More sharing options...
Always_anastasia Posted February 22, 2021 Author Report Share Posted February 22, 2021 12 hours ago, Pistol said: @Always_anastasia - please don't cancel! If you are symptomatic then most likely it will show something. If the type of POTS can be narrowed down by the testing then that could lead to exploring other meds, which in turn could really improve your symptoms. Thank you! I took tour advice and went. I saw a doctor who doesn't know anything about pots 😂 im laughing now even though its upsetting that i was referred to someone who doesnt know about my condition. I asked him about pots he quickly said idk anything about pots you'll have to ask your cardiologist 🤪 Im considering going to dr's outside of kaiser...but apparently there aren't very many specialist that I'm aware of in colorado that dont want a $2,000 dollar deposit upfront. 🤪😮🤯 Who has that kind of money?? They took my blood pressure and heart rate lying down, sitting, and standing. This was the only thing out of the few tests that weren't normal. I did a few breathing test, and some vibrational test (not sure what its called ) these are both normal. My heart skipped once during the breathing test i could not get that thing to go to 20 let alone 40 😂 but surprise its normal 😂 Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 23, 2021 Report Share Posted February 23, 2021 1 hour ago, Always_anastasia said: I asked him about pots he quickly said idk anything about pots you'll have to ask your cardiologist 🤪 Huh! Figures! I think all of us here have encountered docs that don't know beans about POTS. --- Who diagnosed you last year with POTS - was it your cardiologist? Did he do a TTT? And what has he done for treatment so far? If you do not feel you are getting proper treatment from your doc - have you looked at out physicians list? Unfortunately most of us have to travel out of state for specialist care, but you don/t really need a full-on specialist in autonomic disorders - a doc that understands POTS can do wonders. 1 hour ago, Always_anastasia said: Im considering going to dr's outside of kaiser...but apparently there aren't very many specialist that I'm aware of in colorado that dont want a $2,000 dollar deposit upfront. What 😵I have never heard of such amounts! My autonomic specialist asks for $ 400 if you don't have insurance that covers the visit. If that is how much they ask for a visit I would go out of state. Quote Link to comment Share on other sites More sharing options...
Always_anastasia Posted February 23, 2021 Author Report Share Posted February 23, 2021 2 hours ago, Pistol said: Huh! Figures! I think all of us here have encountered docs that don't know beans about POTS. --- Who diagnosed you last year with POTS - was it your cardiologist? Did he do a TTT? And what has he done for treatment so far? If you do not feel you are getting proper treatment from your doc - have you looked at out physicians list? Unfortunately most of us have to travel out of state for specialist care, but you don/t really need a full-on specialist in autonomic disorders - a doc that understands POTS can do wonders. What 😵I have never heard of such amounts! My autonomic specialist asks for $ 400 if you don't have insurance that covers the visit. If that is how much they ask for a visit I would go out of state. It was indeed a cardiologist. I had to fight like h*** to get the referral. We did do a TTT. The diagnosis of pots was called out almost instantly heart rate shot up 50+ bbm ! Which is outrageous 😂 not sure how I didn't passout considering i passout everywhere else. For treatment so far he just recomends a beta blocker ..but he hasn't found the right one i guess 🤷♀️ besides this im not even sure what kind of treatment I'm supposed to be getting as my experience with drs isn't a good one.however i am thankful he believed me and performed the TTT by my request. Travel out of state 😮🤯 wow!? This is crazy that we have to do all of this . Only problem is i haven't been able to work in 2 years , and travel isnt an option 😭 400 dollars ? Is that per visit or for all of your treatment ? Yup there's a lady here who says she specializes in pots and well she wants a lot of money and doesn't take insurance . Shes now treating covid patients at $1,000 patients who have pots or other disorders its 2,000 for the initial visit $1,000 for after care . There's a guy who does free consultations and also has good reviews ..but again doesnt take insurance ..i seriously dont understand why. My mom called my appointment today a waste of time, although i agree . I'm not sure what else to do . Im almost tired of fighting this. Quote Link to comment Share on other sites More sharing options...
Always_anastasia Posted February 23, 2021 Author Report Share Posted February 23, 2021 @Pistolwow she's actually on the physicians list here...she must be good at what she does.i guess i just dont understand her pricing 😭 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 23, 2021 Report Share Posted February 23, 2021 I found a great sounding doc here - she specializes in immune and allergy. Same kind of thing - lots of money up front, it costs money to ever talk with her office or ask a question, she won’t write orders, so many rules. I didn’t think it’d be worth the cost. Too bad, I am sure she is good. Quote Link to comment Share on other sites More sharing options...
Always_anastasia Posted February 23, 2021 Author Report Share Posted February 23, 2021 5 hours ago, RecipeForDisaster said: I found a great sounding doc here - she specializes in immune and allergy. Same kind of thing - lots of money up front, it costs money to ever talk with her office or ask a question, she won’t write orders, so many rules. I didn’t think it’d be worth the cost. Too bad, I am sure she is good. 😂 Are we talking about the same Dr? I didn't know she was recommended here .i mean if you have the money sure why not?? It simply means she's focused on helping a certain demographic unfortunately . It truly sucks that more dr's aren't aware of pots/ dysautonomia and we have little to work with. at this point we know more about the condition, than the "experts" don't want to sound mean ..but if every neurologist keeps writing me off with conversion disorder/ anxiety when I dont have any conversion disorder symptoms what should i do? Curse and scream ? Lol! That will solidify that. At this point im ready to throw in the towel. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 23, 2021 Report Share Posted February 23, 2021 She’s in NY. I don’t know if she’d be that helpful without writing orders - now I need to convince another of my doctors to carry out her wishes? I don’t know if anyone else who does the immune system end of things. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 24, 2021 Report Share Posted February 24, 2021 @RecipeForDisaster - if she does not write orders - could it be that she is not a medical doctor? Maybe more of alternative medicine? Unfortunately that is not ever covered by insurance here in the US, and they cannot write orders but often give out prescriptions from their own stock. For example chiropractors cannot write orders for tests or prescriptions but are called Dr's. ( Not meant to sound downplaying chiropractors - I have a wonderful one that helps me a lot ). Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 24, 2021 Report Share Posted February 24, 2021 She is an MD. It’s just like she doesn’t want to do that part! Quote Link to comment Share on other sites More sharing options...
yogini Posted February 25, 2021 Report Share Posted February 25, 2021 14 hours ago, RecipeForDisaster said: She is an MD. It’s just like she doesn’t want to do that part! I would be wary of going to a doctor that doesn’t want to give me their 100%, especially if paying out of pocket. No way. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 25, 2021 Report Share Posted February 25, 2021 I know! I have good insurance, and she takes it, plus a lot out of pocket. I think I'd end up between a rock and a hard place with her, no matter how groundbreaking she was. Quote Link to comment Share on other sites More sharing options...
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