Lemons2lemonade

A lot of people have been asking me this, so i thought i would share: My parents work for the school district, and i am under their insurance which is an HMO. Since i have had pots, there have been four different doctors monitoring my condition. -My general practitioner (who i see for my bags of fluid/ typical care, we get in a lot of arguments) -my cardiologist (who i talked to more often while on beta blockers, and also who i call when my pulse/bp acts funny) -my internal medicine doctors( who are the on call doctors in the hospital. They run all of my obscure requests for blood work, regulate medication dosages, and communicate between other specialists, they are kind of like my advocates. If i get admitted to the hospital, these are the people who come to see me, and find a treatment plan for my discharge) -my neurologist (who basically threw up his hands and caved on writing a referral) He wrote the referral and expressed some concern about its being approved. The referral went something like this-- lemons is approved to go to mayo clinic for the following: blood work, 6 consultations, minor lab work, and x-ray. The scope of this referral was limited and i wish i would have known then what i know now about tests that would be performed. The language did not include my emg, evoked potential test, autonomic reflex scan, holter monitor, and also to speak to a GI dr. down there for my issues--a referral that dr. g wrote. After making some phone calls, i learned that mayo would not tell me the tests to be ordered until i saw dr. g. I talked to the secretary in dr. G's office, dr. G's nurse and also mayo's preapproval department in search of these variables. The last phone call i made was to my insurance company to tell them that i could not retrieve this specific information from mayo, and i wanted to ensure that the needed tests would be covered. A representative assured me that needed tests would be covered. I took down the representatives name, the confirmation number of the call and also the date/time of the call. I also took down all of the info of my calls with mayo. This information, and this double checking are possibly the only reasons i was able to be seen. If i had not have documented these conversations and had the confirmation number of my referral approval, i doubt my referral issues while down there would have been resolved. During this process, i learned that when my dr. writes a referral it goes to a medical director/medical board who determines whether or not it will be approved. If one of my referrals is denied, there is an appeals process to go through, where i can contest this decision.

Hi rissy, interesting! I think there is also a connection to bacteria in the soil for grass sickness.

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Chaos, yeah, on my lab result sheet it says ( U Na Volume--1800) and then measured in mL, perhaps he was talking about a different value of the same ratio. My urine sodium concentration was 80 mmol/ liter, and urine sodium MML was 146

Lynne, hopefully the next round of shots will help! I hope you start to feel better soon! I feel like staying positive with pots is half the battle, so to speak

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haha love it!

I should also mention that i had insurance company issues, which i posted on here about before, and that the schedule became very tight. The following monday, dr. g skipped his lunch to meet with me. What an amazing person.

momdi, yes, that is a very accurate description. At first i thought he just wasn't a very nice person, but then when he was quoting me spot on a week later, i realized how intently he was listening.

http://www.jurology.com/article/S0022-5347(07)02032-0/abstract Circadian rythyms and kidney functions

http://www.ncbi.nlm.nih.gov/m/pubmed/9495658/

Ash, I use a salt solution, water and salt mixed together as a shot, have found that it works better for me than tabs. jangle, I think he just meant gatorade or pedialyte, which means salt to me. Probably wouldn't hurt to throw in some oj or a banana for some potassium, I take potassium already because of the florinef. Bananas, yes, the rest can be water. Also, it probably depends on the person but neither gatorade nor pedialyte would be even close for me for potassium. I take supplemented potassium.

http://www.anaesthesiamcq.com/AcidBaseBook/ab2_4.php

sexual arousal has a lot to do with the ANS

Also, thank you to mary and sue and everyone else for your concern. Also, Issie, thank you for welcoming me to Arizona and sharing your story with me--also for your never-ending support. Both for myself and everyone else on this forum, you truly are an amazing and remarkable woman!! It took me a long time to write this because i wanted to do a lot of thinking about how i would post this, and i wanted it to be as informative as possible.

*if any one wants to hear about my trip feel free to message me, thanks!

Yes this is needed

Today at noon

High ace, low plasma lactate, and low potassium

The good news is that I did get some high hrs on the holter that evening, 140 laying down.

Emma, I wish. I had palpitations last night, going to guess around 130 and 160-180 happens from time to time. Usually during my worst pots attacks. There is no method to it and periods of low hr seem to have little to do with how high it gets. I think it is just another presentation of how messed up my ans is. The low hrs feel just as terrible as the high hrs, only unlike the high hrs, you can't fight going to sleep. It just feels like there's nothing in you. No energy, no strength, nothing. Jangle it popped up 75 right after I stood and quickly meanderded back down to the low 50's. And was hanging in the low 50s for the rest of the time. My heart was also doing its favorite thing to do during bradycardia, which I call the accordian. Goes up to 60 falls down to 50 every 15 seconds or so- up, down, up, down.

I should also mention thst this was.going on during the extensive testing, I.e. sweat test, breathing test, ttt

To all of you out there with bradycardia, I had it during all of my mayo testing and plan on talking to Dr. Goodman about it on Monday. Luckily, I was quite orthostatic and tachycardic the first day I went and saw him where he did orthostatic vitals in the exam room. And of course no tachycardia during my autonomic testing, just bradycardia, even on standing. So, at least it is on the record now with one of the top autonomic doctors in the country. I'm sure a lot of pots people get tachy on these tests, but rarely do they see a potsie get bradycardic, which I have read that many of us on here are going through. I kinda wish I was having more tachy, but the Brady is just as bad and makes me super tired, maybe we can get some answers for this bradycardia business. My holter monitor was also put on that night. If my hr was 54 standing, I don't even want to know how low it got while I slept.

Hmm Naomi, I'm not sure...Sue, yes it was a very short ttt.

Does 9 hours count I felt bad at first, but then got over it, tried to keep my feet up.