jrlehnardt

So i actually have had a lot of experience with this. i even was on a couple pheo forums for a long time. they are very nice and helpful there, but it turns out i dont have a phro but that i have hyper pots. most people with a pheo will have your levels much more elevated substantially. for the past 2years i have had elevated morepinephrine levels in blood and 24 hr urine. it was always 2-3.5x the normal but never 4x which is diagnostic of a pheo. i had ct of my adrenals and they even did a mibg scan never found anything. finally went to mayo and had the blood work done laying down and standing and they dx me with hyper pots. but u have many more problems than me so uou should definitely have it all looked at. by any chance do u have eds as well? just from ur other health issues it may be something to look at.

Sorry, just now getting back to everyone. I thought I would be able to throughout the week. But oh was I wrong. I did expect the travel and testing to be exhausting, but I didnt expect it to be so bad on me. And than when I got back home I thought I would be tired but I thought I would at least be able to get online. I was so exhausted, I have been sleeping almost all day and night. Finally I am starting to have a couple hours where I feel my normal potsy self again. I had an awesome trip though. I was so glad to had gotten to see all the amazing doctors I did, and also have all the tests done, and have the doctors know what these tests mean. I have anwsers and a plan of action now. I will actually do a new post with my account of that weeks and my results.

From what i know, yes they are very different. i believe the cardiac perfusion uses nuclear scan,and maybe a stress test and is mor elooking at the heart?? am i correct with thinking that? the ccsvi doppler scan is like a sonogram and checks the veins in th head, neck to the heart, it uses sound waves. i am sure there is more to it but there is a site that explains it, and they are specially trained to do this and look for ccsvi specifically. i plan on having it done on tuesday so i can let you know how it is done.

yes i called the arizona doppler today and explained my situation of not knowing if the mayo can test for it and not knowing my schedule and they said they were booked all week, but the guy that does it is willing to stay late on tuesday and do a late appt at 530pm for me. they understand if i cant make it and i just need to let them know. i cant believe how much they are willing to do for me, they were so nice. i will keep everyone updated on it.

Wow, now I understand why you were there that long. Yes I went through all that stuff over the last few years,but mainly this last year and a half I have seen so many doctors, specialist, done so many tests,etc... and got a couple diagnosis. But I was able to do all of them locally here in Georgia. Before that I was poked and prodded, and sent away by so many doctors and others I just baffled. But what is funny, is I diagnosed myself pretty much. After many years of unanswered questions and searching on the internet I found POTS and it explained me to a tee, and than I saw that eds was common too. So I brought all that info to my doctors and he said ya it seems right. So he sent me from there to a rheumatologist who diagnosed the eds (which he himself has), and than I was able to get a ttt through the cardiologist after my doctor fought to get it done, cause the cardiologist did not want to do it and he just wanted to put me on beta blockers. But my doctor fought and I eventually got it done after I went to patient advocacy and that diagnosed me right away. I decided to get a rental car, I just dont want to feel stranded. My brother has an extra car, but the ac is broke and he doesnt know if it will be fixed by sunday when I fly in. Yeah it has been in the 90s here for about 3 weeks, but today was alot cooler at 85! Here is a link to the arizona place that is well known for diagnosing ccsvi. http://ccsvi.azdoppler.com/ . I think I will do this if the mayo is not able too. Thanks again. I am much more calm with all the info you have provided.

Wow, your first time 3 weeks and 2nd 2 weeks? When i spoke with Dr. Goodman's office months ago to make the appt. they said plan on a week. of course they said it could be longer or shorter. If you dont mind me asking why was it 2 and 3 weeks. Was it to get in with all the other doctors he wanted you to see. Do you think if I am on standby, what are my chances of being seen that week. My sister will only be able to stay a week with me, and I can only imagine how bad it will be for my family to be gone that long. I have 5 kids. Yes, it is amazing I do have some answers because all those answers have just been since July last year. I had nothing before. Even though I have eds, I dont think my pots is secindary to that, as it didnt come on gradual. It came on suddenly after a surgery. But in the last 1.5 years, it changed and is extremely bad and I have the hyper symptoms, where I didnt have those before. So I am hoping to find out if it is the hyper kind or what might be helpful as I have tried beta blockers,etc and made me worse. But I started on an h1 h2 about 3 months ago, I think (brain fog) and I am starting to be a little better, anything is better than where I was 4 months ago. So I am pretty sure there is something with the mast cells. Yes I have brain fog bad. I read somewhere where it might be helpful to bring a recorder also. I am very glad my sister is going so she can take notes and remember too. Yes I am staying at the hotel on the campus. Thanks, I was wondering if I would need to walk a long way or if there was a shuttle. My insurance didnt approve a rental car but they said they would cover taxi cost. With having to go places to eat a couple times a day, would a taxi work, or should I just get a rental car? By the way Issie, thank you so much for your help, it is grately appreciated. I lived in Mesa when I was young and have a brother that lives there now. So I will be able to see them during the trip.

Thanks Issie, I did not know that. i didnt leave a message, he just kind of hurried me off the phone. so i may have just gotten him at a bad day or time. Maybe i am just stressing too much right now. its just that it took 5 years just to get my dx and than another year and a half of testings, labs, trial and error with so many meds. and back to where i started from a year and a half ago. i know everyone has been in this same boat or almost the same. i just dont want to do a trip out there and run into too many snags. it took alot to get all of this approved to go since i am going outside of the region i live in for tricare. in fact this area has only approved 2 people to go and be covered by insurance outside of our region. one being a pediatric patient with something else, and insurance will only cover the medical bills, not the travel etc. and me , which they are covering the medical bills, travel, food, hotel, and for my sister to travel with me( a nonmedical travel asssistant), and her food and travel as well. but it was a lot of work on my part to get it. the same lady that approved it all ( the boss) was the same lady that told me they would never cover any of it. so i know how important it is to do the work myself, the phone calls, the research, etc...

i will definitely let everyone about the ccsvi test. so i will talk with dr. g about mast cells and if i cant get in with dr. lewis i will just have my doctor do a referral to dr. afrin instead when i get back. well i called dr. g office cause i had those questions along with another one about the test he has already ordered. and this time i did not get anywhere. everytime i have called, they have always been extremely helpful. this time i got a guy i had never spoken with. he interrupted me before i could finish my question, with an answer to a question i gues he thought i was going to ask. and than i let him finish and i said thanks but that isnt my question. so i asked it, and instead of being helpful, he said you dont need to worry about anything at all, when it comes to insurance cause we have a team that works with that and you dont do anything except show up . ok that did not help me at all. becasue with my insurance, military insurance, this has been the biggest problem, and it has only happened with me keeping a couple steps ahead. i have had to deal with insurance so many times, it isnt funny, so i know that i cant just show up and expect everything to go well because with my insurance the only way everything is approved is once dr g has said what i need i have to call my doctor and have him put in the same referrals that dr. g has put in, becasue tricare wont approve it if it is just from dr. g. they have to have my doctor put it in. and than after that i have the tricare boss' cell number to call her right after my doctor has put it in, so she can watch for the referrals and approve them immediately so i can get them all done while i am out here. ughh! sorry for venting... i just wish that guy could have been more help or had me talk with th insurance people.. well ok my rant is over, lol

thanks. yes i am going to call dr. g's office and ask. my hubby is military so i have tricare and really the way they like it is a referral from my pcm here. so i can call my doctor and ask him to put in those referrals but i want some backing like dr. g would probably send me to see them, instead of it just coming from me. ya i think i will end up being on standby for all of the appts exceptdr, g's. his office told me not to worry, since i was coming from out of town, they would make sure it all happened that week, but i am definitely nervous. my insurance is so sick of paying for so many things and hospitals and ers that they said they want me to get answers too, so they said they would cover everything at the mayo while i am there. they are even paying for my sister to travel with me, since my doctor knows i need someone to help me. they are doing really good, but but they dont necessarily want me to have to come back later for more appts. but they do know that that is a possiblility. also if i cant get in with dr. lewis, i am here in georgia, so i am alot closer to dr. afrin, and insurance would probably be willing to pay for that one as it is alot closer. i did have a laying down mri to check for chiari already and it was only slightly below the line so they said i didnt have it, but i do wonder what it would be if i was standing? ya if the mayo cant test for ccsvi i will probably just pay for it myself at that doppler place. it is about 600s which is not bad , especially if i come back with a diagnoses for doctors to look at.

oh ya, was thinking of going off my h1 and h2 blockers to hopefully possibly have an episode that they could catch with the mast cell labs. what do you all think. i dont want to go through that misery, but i am always way worse if i dont take them and within a day have major flushing and pots symptoms are worse and when i have been off a couple days i get tremors. so not fun, but if i am going to have labs i would want to catch a flare up.

Awesome, thanks. yes i do have eds as well. already diagnosed with hypermobility but not sure of others as i have not had the testing done. my insurance wont cover it. but they have said everything done at mayo will be covered. so i am hoping i can get some tests done for eds and mast cell while there. the part that they wont cover is if i go to the other place i think it is called arizona doppler and ultrasound or something like that, they dx ccsvi all the time, so i was thinking of having that done while i am out there. i have already been dx with a ttt. but have not done any other autonomic testing. i do have a question. my insurance wont approve me to go see the allergist or rheumatologist there until dr goodman refers me to see them. can i make an appt with them ahead of time, without having a referral. or will they say they cant make an appt till insurance approves it?

I am going to the az mayo clinic next week. I fly in may 13 and start my testing and seeing dr. goodman on the 14th. Is anyone else going to be ther that week? Also i was just wondering, since many of you have seen him, what is he up to date on? meaning, i dont want to have to bring articles about pots stuff if he already knows and is testing for it. I guess for me particular, I have problems with my norepinephrine and wondering if I needed to bring the paper from vanderbilt about the norepinephrine inhibitors? or something like that. Also mast cells? is he aware of the connection or should i bring an article, like from prettyill or is there a better one? also ccsvi, is he aware of this one, and can they even check for it? I know there is a place not too far away that is very well known for testing for ccsvi and i was just wondering if i should go to them since I will be out that way anyway? problem is they dont take insurance so i hope dr. goodman can order it and i can have it done at mayo. What articles should i bringfor him?

that would make sense that it wasnt in properly. because this nurse blew another vein first, and i have never had a blown vein ever. as he was putting it in, it almost poked through the otherside and than he did this one in my hand. and his relieve nurse came in and kept checking on it because she thought this one was going to blow too. and now this vein sticks out and is bubbly almost like it feels like clots. and the vein he blew doesnt even feel like this. so i dont know what happened but it did burn all over the hand when they put the morphine in not just in the vein like normal meds that burn. so that makes sense.

well i already had benadryl in me as i am pretty sure i might have something with mast cells. i have been on benadryl and zantac for almost 2 months. before that i was so nauseous i coukdnt even eat and i would get flushing really really bad and i would get tremors. ever since starting those meds i am doing better i havent had one tremor since. the upper body flushing has only happened a couple of times instead of almost all day long. and the nausea still ahs its ups and downs but for the most part is better. i just didnt know what this reaction was. i have only had morphine one other time and that was years ago and i dont remember too much of a reaction maybe a little bit of breathing problems but i thought that was due to pots symptoms as i hadnt been dx'd yet. i usually do some other pain med

i ended up going to the er due to nausea, headache, bloating, belching, and after they gave me two "gi cocktails" and not feeling like it did anything they gave me morphine through the iv. it burned a lot which i thought was just normal as some meds burn, but this burned a lot. than my hand (where the iv was) turned bright red and my forearm had red spots on it, not big like hives but small dots all over. the nurse was a little concerned but since i didnt feel like it affected my breathing they werent too concerned. my question is do any of you know what type of reaction this is even though it was only ion my arm not breathing being affected. is this a mast cell reaction? any input would be helpful

thanks, i ended up going in. i end up having to go in abnout every 3 weeks, and i try everytime to just put it off another day.my hubby is in the military and i have to go to the military er and my doctor has been gone on tdy and i have been meaning to talk with him. i do have an outstanding order for fluids but everytime they want to make sure there isnt another problem so i get stuck there getting blood draws, meds pushed in me, ct, ultrasounds etc. and all i want is the iv fluid. but i did find out today from an ultrasound they did that my gallbladder is not in the normal placement. instead if being i guess behind the liver it is lower and next too it. i always have pain where it is but there are no stones.

is there a good document or link or study of some sort that i could bring into the ER or to my doctors about how or why us Pots patients need iv fluid and feel better after? i have been to the er plenty of times and even when i need to go i keep putting it off for as long as i can, feeling worse each day just because i dont want to deal with explaining to the docotrs that all i need is iv fluid and me fearing i will have to push and fight for more than one bag. anyone have a good document i could print and bring in with me to help ease my anxiety of this. i really have not had any bad er trips but i always am so anxious about it avtually happenning.

thanks, i do try to drink 3 liters a day but it usually is more like 2 and my salt i try to get anywhere from 4-8 grams of salt. i tried florinef and it did not work for me at all. i have not tried compression stockings yet but i have been meaning to. my bp is just low today and makes me feel so bad cant even get out of bed. another question? i feel like i am not getting enough oxygen, do many of you have an oxgygen sensor at home to check? also is it just me feeling like i am not getting enough oxygen or do pots patients have low oxygen levels too?

i was just wondering what you do that seems to help to increase your bp when it is extra low? is there any type of food or drink that helps increase bp? what mecications or other treatments will help on those low bp days?

Where is the mast cell blog forum, iw would be interested as I think I may have problems with mast cells and would like to read more

Yes I have read that paper unfortunately I don't understand what it really means as there are too many big words I don't understand yet,lol. Not sure if I have hyper or not since the first 4 years were nothing like the last 2. I have had high BP in the last few months but it is also normal or a little low all in the same day. Ido think there may be some mast cell thing with me but it could also be other auto immune thing I guess as well, i know I don't have the skin problems like the skin mast cell disease. I am hoping for Dr Goodman to help me out with doing tests and labs. It is weird that by accident I found the at benadryl helps calm my body. I had been sick with a cold for weeks and had taken every type of cold emdicine and nothing helped with any of my symptoms and i wasn't sleeping well so my hubby went to the gas station and got a generic sleep aid which helped my "cold" and cleared me up within 30 mins of taking it and it calmed my anxiety episodes. Well after thinking that was strange that a sleep aid would do that as others haven't before I looked at the ingredient and it was benadryl. But glad I found it as it helps calm me down even though it really doesn't help with sleep, lol.

Can anyone tell me why when i take benadryl it really helps me and calms my anxious, heart pounding fidgity feeling? I have had pots for 6 years also have eds, not sure if that is my cause or if there is another cause as well as mine started after a surgery. My pots for 4 years was where normal heart rate lying down and about 150s upon standing, have never fainted, always cold, headaches, lightheadedness. The last 2 years I have had excessive sweating, still cold hands and feet but flushing in my face and upper trunk, really high levels of norepinephrine, anxiety episodes (not really anxiety though). I don't know what type I have or what other problems disorders I may have. I was just dx in this last year trying to get in with Dr Goodman for more testing to try to find out, but since i don't understand a lot of the medical terms, does it seem like there is a mast cell problem possibly or what does it mean with norepinephrine and why would a anti histamine like benadryl help with my symptoms of pots? And is there something else that works better, I have heard of histamine nlockers but don't know much? I am not really being treated right now as they have tried a couple beta blocker and florinef and they have not worked?

OK thanks!

OK, just got off the phone with my insurance so I know what has to be done to get it all approved, it is different from regular insurance as it is insurance for military and i am seen at a military facility so i do have to do more but it should work out. But I do need to call the mayo and find out what other specialists I might be seeing that week because i do have to have a referral in and approved for all not just Dr. Goodman. I looked online and all I could find was a general number for the mayo and to make appt. I am not ready to make an appt as I still am working with insurance and referrals, is there a number to call to talk to the desk at Dr. Goodmans office so I can ask what other specialists I need to see during that time. Does anyone know the phone number, julieph85?

OK so i have my doctor saying I should go to the mayo clinic and see Dr Goodman. Now that he is putting in the referral, what should I do? Do I talk with insurance? Do I call mayo and ask if they deal with my insurance, do I talk to the Dr goodmans office and ask what type of people and tests I will need to be seeing during the same week because if my insurance approves me to see Dr Goodman but then he wants me to see a cardio, endo, etc. Wouldn't it be best that I have had my pcp put all those referrals in and approved before I get there? How do I get in as fast as can? I am just needing some tips/advice for all this to go smoothly and as quickly as possible. I have been waiting over a year to be able to go (had pots for 6) but the last 2 years I have been bedridden and getting worse, so I don't want to waste any more time and I want to have everythinglined up so i don't run into glitches with insurance (we have military insurance)