Seeing Dr. Goodman Next Week ???s

[jrlehnardt]

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?

[DBP4620]

Dr Goodman is very knowledgable and up to date on most things related to and involving areas of pots. While I never brought him an article he strikes me as the type of doctor who would gladly look at anything you brought him and give you his opinion. In terms of mast cell mayo az has an amazing allergist who has a strong interest and knowledge about both mast cell and knowledge of pots his name is dr john Lewis and I would strongly reccomended calling ASAP to try to get in with him during your trip as he books up quick his secretary is really great and her name is Terry in the allergy department.

[issie]

He has the theory of Dr. Driscol - but, I don't think he has her latest info. I don't know if he read it, because I haven't seen him since I gave it to him. (A year ago, with me just telling him about her ideas - he didn't buy into it.) He knows about NE issues and will test for that - just be sure to tell him all your symptoms. If you think you have EDS - be sure and mention that too - Dr. Griffing - rheumatologist diagnosed me there. And yes, Dr. Lewis is the guy for MCAS - although when I saw him about a year ago - didn't get very far with that - they will do the testing for you though - just not sure it will show anything unless you're in a flare. He may know of Dr. Afrin's work with taking biopsies through endoscope - but, if he doesn't that would be a good thing to take with you - that information. It'd be real good for him to have that info. For a pivotal doctor I highly recommend Dr. Windgassen, she's an internest- she is the most through doctor I've EVER (and I do mean EVER) been to. She is great and leaves no stone unturned. Dr. Matthew Butters for PT, Dr. Sekulic for dermatology - oh, I've seen about 16 different doctors there.

One important thing to keep in mind. Once you get a doctor you can not change doctors within that department. So try to get the "good" doctors that have a clue about POTS and are more up on what to look for. All of the ones above - I can highly recommend.

I'm not going to be at the clinic but I live here in Phoenix. You can PM me if you have other questions.

Issie

[Maiysa]

HI, Good luck with your appointment and I hope you get some answers that you are looking for. My insurance doesn't cover Mayo either, so he was so wonderful about working with my other doctors for tests that I couldn't afford at Mayo. But he did prefer me to do the Qsart there since most places don't carry it anyhow. And he thought that would give me a diagnosis since the TTT didn't. And he was right. "PM me for more details on how I worked out payment, if you wish" talk with the girls at . Dr. Goodman is such a good listener also and understands. He is starting to have a few patients with all three issues of Mast Cell also and EDS so if you have that he is aware but not sure how much yet. Issie, so glad you were able to give him the book.

Maiysa

[jrlehnardt]

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?

[jrlehnardt]

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.

[issie]

I always go off of everything before I do test - but, you need to allow your body to go back to baseline and not be in the place where things get worse before they get better stage. That's just me though.

Mayo will make appt. without referrals - but, you have more chance of getting one faster if the doc. refers you - it's a hard call - I know all these docs book up and some have to wait for months to get in to see them. You could call and tell them the situation and ask their opinion on what to do. You could even call Dr. G's office and pose that question. If you need the referral for ins. to pay - it's up to you to make sure you clear it and it's been done ---before you see these docs. Don't count on everything being done for you. Bring a notebook and don't hesitate to write yourself notes. It is a little overwhelming - but, Mayo is a well oiled machine. Very good at diagnositics. You can get your test results by going to the desk on the main floor and requesting them each day if you want. That way, if there are any questions that come up - you will know what to ask about.

I'd like the info on the other place that does that test. Let us know if they do it at Mayo. I haven't talked about any of the new info in the 2nd book of Dr. Driscol with Dr. G. I just gave him the first theory paper. So, will be interested to know if he will pursue her ideas. If you think you have Chairi - then be sure and bring that up too - they can do an MRI and take a look at that. I don't think they have an upright MRI though - so it would be lying and not so sure with us EDSers that will show accurately. Even with lying my cerebral tonsils are slightly dropped - but, of course who knows what happens while upright.

Mayo is really expensive and they usually repeat any test that you've had before. So, be aware that the bills are enormous. Make sure you have your insurance in place.

Issie

[jrlehnardt]

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.

[issie]

If you have the chance to go to Dr. Afrin - that's my dream. I really didn't get a whole lot of info or confirmed DX here - just probable. Dr. Lewis is a nice guy - but Dr. Afrin is THE guy on this.

Let us know about the CCSVI test.

Issie

[jrlehnardt]

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

[issie]

He is an x-military guy himself - the one you spoke with (and a good guy). Did you have him take a message and get it to either Janie or Dr. G? If not, you might call back and say you need to make sure to just ease your mind - cause you know how difficult military insurance is. I don't know - don't give up - keep pushing for what you need.

Issie

[jrlehnardt]

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...

[issie]

Your stressing is totally understandable. Hey, I stress and all I have to do is get in a car and drive less than a half hour to get there. We are so afraid that something will be missed and it will be a crucial part of our puzzle. I do think it's a good idea to go there with an agenda and not be afraid to ask for what you want. They are there to provide a service and make money and they aren't going to fuss too much to run more test. But, we do need to educate ourselves and go there somewhat informed. It's good you will have another set of ears to help you stay focused. I don't know about you - but, when I get stressed my brain fog kicks in and I have to just hope I come away with the most important things in mind. I've been through the whole gamit of Mayo three times now. I'm not done either. The first time, I didn't live here and was there for 3 weeks, the second time for 2 weeks and the last time - since I lived here then it's off and on for over 6 months. They don't run you through the fast pace when you live here - you have to wait for openings. And I'm on the phone about every other week to Janie in the last two months - Dr. G's nurse - trying to sort my meds out and whats going on with me. So, I well know that you want the best and the most in the shortest possible time. It sounds like you are coming here with many of your answers already - so you are steps ahead of some. But, with this illness - there are no two exactly the same and it's complex and complicated. It takes time to find the right combination for each person.

That's amazing the insurance is paying for your travel and food for both you and your sis. Are you staying at the hotel that is on the edge of the entrance to Mayo Clinic? They actually have a bus that will take you up to the Clinic and then if you need to go to the hospital for other testing a bus from Mayo will take you there. So, there isn't a whole lot of driving if you stay close by. If you go down Shea towards the interstate there are a lot of eating places and all up and down Frank Lloyd Wright there are eating and shopping places. I hope your visit is a sucess and you get your answers.

Issie

[jrlehnardt]

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.

[issie]

I was there so long because I had a very wrong diagnosis and it was before Dr. G got there. The first time so long, because I was so sick and the TTT was the very last test done. It should have been the first test done and then I wouldn't had been there that long. The second time, it was to rule out other things - because I didn't get my POTS diagnosis until the very last day of my being there. I got the EDS diagnosis and a whole bunch of other things - brain tumor, thyroid tumor, liver lesion . . .osteoarthritis, FMS . . .you get the picture. So, it was like starting at the begining on the 2nd visit. Now, I have to go in yearly for MRI's for the all the tumor issues and follow-ups. I'm hoping you get somewhere with Dr. Driscolls ideas with the vagus nerve issues and the pressure on the brain. This is an area - I barely touched on and other things were more pressing.

It seems many of us have had surgeries and there seems to be some sort of connection there.

There is a resturant in the hotel and the food at Mayo is good. But, the food in the hotel is just okay - but that was 4 years ago. If you want to go to one of the other resturants - might be better to have a car. It's not that far to go - but, I'd hate to be stranded for a week. Maybe, your brother will loan you one. If you don't mind taxis - it wouldn't be that far - but, it would be pricey. Do you know Chompies resturant? Many people seem to like to go there when they come. It was on the Diner show.

I'm not sure how busy Mayo is this time of year. It slows down a little in the summer - cause it's so hot here. But, it's only in the 90's right now - so not bad. (ha!ha! That's relative isn't it.) But, today it was raining and it's cooled off considerably. ( I had ducks in my pool today - ha!ha! . . .messy things, they are. Got them out after I took lots of pictures.) But, it just depends on how booked up they are. They stay open til around 5:30 and open real early in the a.m. - but, they don't work on the weekends. It depends on who all you need to see and what you want to rule out. If it's mainly just to find out more possiblities in regards to POTS issues - then probably pretty good. Except Dr. Lewis is pretty booked up - but you have another alternative thing there. Dr. Windgassen is really booked up and I love her. And you already know you have EDS - so no need to go over that again. So, it will mostly be test and Dr. G will order those and you will get most of those done pretty fast. Have your running shoes on - it's a fast pace. But, they do have wheelchairs at the entrance you can borrow and ride around. I wouldn't worry too much about it - they are pretty good at accomodating you. They will ask you a date to end your appointments - give yourself at least one leeway day and try to get them all in before you have your last day there. Then you can get your reports and review them before you see Dr. G for your final follow-up.

Okay, can't really think of anything else to tell you. Hope all goes good. Let me know how it goes.

Issie

[jrlehnardt]

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.

[issie]

I'm glad, I could help.

Thanks for the link. Hope things go well for you.

Issie

[jrlehnardt]

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.

[tachyfor50years]

If you don't mind, I have a question; is there a difference between cardiac perfusion imaging and CCSVI Doppler?

Thanks in advance.

[jrlehnardt]

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.

[Lemons2lemonade]

Jr, you are totally founded in your insurance concerns. I had the same concerns before i left, talked to the same man, and ran into problems while I was down there. First off, i also do not communicate well with that man he sounds older but i have never met him in real life--he is a receptionist i believe for the neurology office. Honestly, when i call, i just ask for Janie, Dr. Goodman's nurse so i don't get stonewalled by him for whatever reason. So here's the catch on the insurance issue. So your insurance is going to want to approve any out of region care that you get. This includes testing, consultations, mris, etc. What i did, is i called my insurance company before i left, and had a clear conversation on the phone with them about what to do when such issues arise. I took down the person's name, date, time, and confirmation number--she said not to worry, that everything would be covered. I got down there, and my insurance company began to fight. Here is my post about it

All i can say is back yourself up. Bring a paper copy of the referral with you, and try to iron out as much as possible before you go. Ask about what their coverage policy is on tests, what if this doctor orders tests(which you can bet he will) what is the process of getting approved for such tests etc. What if this doctor wants me to see another specialist down there, is that covered, (you may need 2 referrals). Seriously, go get a notebook, or staple some pieces of paper together and start recording information. Who you are talking to, the content of the conversation, what time the phone calls are made, the date, the phone number you are calling from, and any confirmation codes you can get. In that notebook, put in a paper copy of the referral. Also, include phone numbers like to your doctors office, insurance phone numbers, etc. This notebook goes with you to mayo.I believe this recordkeeping is the ONLY reason i was approved in the end. Additionally, if you run into problems on insurance "phone lines i.e. customer service call centers" google the corporate office for your insurance company, call the number, and ask to speak with the medical director. You will probably get a secretary, who has the ability to push things through--i wouldn't do this until you are down there and have problems though--sometimes you don't want such high ups knowing that they approved such a costly referral. Really it is kind of a catch-22. I need to be approved to get these tests done, but i won't know what tests i need done until i see dr. g. So the best you can do is know what needs to be done, so that while you are down there, things are easier to navigate through. And of course--bring your cell phone and some type of internet access if you can. It would be nice if we lived in a world where these problems with insurance didn't exist but they do. Its sad isn't it, that you have to fight for your care?

This is the type of list i was looking for, that no one at mayo would give me, but i am giving you, your tests may be different, but i have a feeling many of these are standard procedure, maybe you can get your insurance going on some of these. These were the tests ordered for me by dr. g at mayo:

For lab: 24 hr urine sodium

Bloodwork:

-am cortisol

- 25 hydroxy cut d2 d3

- alt

- anca panel

- angiotensin converting enzyme

- antinuclear ab

- ast

- vit b 12

- calcium

- cbc

- copper

- creatinine

- electrolyte panel

- extractable nuclear antigen antibody with ena panel

- folate

- ferretin

- glutamic acid

- gliadin antibodies

- glucose

- hemoglobin 1ac

- lactate plasma

- paraneoplastic autoantibody evaluation

- pyruvic acid

- sedimentation rate

- tsh

- tissue transglutaminase ab iga

- tryptase

- catecholamine fract ortho endo

And for diagnostic tests:

- emg

- holter monitor

- autonomic reflex screen ( look up to get info on it)

Also, be sure that the scope of your referral is wide enough to meet your needs, such that the language includes more than just consultation but also imaging, lab/bloodwork, and referrals to other specialists if needed. The big one is the autonomic reflex screen--this is the one that most places can't do--use it to your advantage that your insurance provider can't do this.

Here are some additional posts i had about my experience down there, hope it helps! Let me know if you have anymore questions.

[tachyfor50years]

Thanks jr, I really appretiate your time and effort.

[issie]

Soooooooo, how'd your appointment go????

Issie

[jrlehnardt]

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.

[DoozlyGirl]

If you don't mind, I have a question; is there a difference between cardiac perfusion imaging and CCSVI Doppler?

Thanks in advance.

Tachy,

Cardiac perfusion imaging is a nuclear medicine procedure and most often performed as two scans, one at rest, and the second after an excercise stress test. This test mainly looks for heart disease by determining which coronary arteries are blocked.

Doppler is an ultrasound technique of looking at blood flow.

Lyn