amyksmith

One thing you don't ask about is BP - The propanolol decreased my BP too much, causing trouble with syncope, even though my tachycardia and shortness of breath were much improved. I'm on Florinef again now (third time trying it, with a few years between each round). It's week nine and the leg cramps aren't alleviated by the potassium supplements and my anxiety is absurd. But, it does give me some help with the hypotension.

Right now my neurologist has me trying prescription (obviously) amphetamine salts. I do not recommend this at all. It feels dreadful. I'm on week 8 and I'm about ready to beg to quit. Also, it's not particularly effective.

Hi - I've purchased my medical alert bracelets from an online place weirdly called sticky jewelry (stickyj.com). Weird name, odd-looking website but completely legitimate. I liked the variety of choices in chains and shapes for the actual engraved piece. I definitely agree with FaintingGoat, that it is much easier to read if you get the black paint put into the engraving. I have one that's the engraved piece as an oval shape with a stainless steel chain and a second one that's easily washed for working in the garden or exercising as possible etc. Neither cost more than $25. I've replaced the engraved oval on the chain one once because I didn't get the black in the lettering and it got too difficult for anyone to read (replacement needed suggested by an ER triage RN). Otherwise I have no complaints at all. I had mine engraved with exactly the wording my POTs doctor told me to use, so ask yours before you do it. But, for what it's worth mine says on four lines in all caps..... Orthostatic Tachycardia & Hypotension Freq Syncope He had all his POTs patients use that phrasing because he said too many EMTs didn't know what POTS was and the "orthostatic" bit prevents them from pulling you up too quickly. In my wallet and on the locked screensaver of my phone there's an "in case of emergency call" note. Good luck - Amy

I highly recommend getting a step ladder that is tall enough that you can sit on it while you prepare foods. I tried a stool but it doesn't help as much with blood pooling as the step ladder since with the ladder I can put my feet higher (closer to my butt) and that helps a lot. Otherwise I can't really manage too well with cooking/ food prep unless I can do everything sitting down at the table and just put a dish into the oven. No stove-top cooking for me at all anymore. As for dietary changes, mine were made mostly for my GI problems, but I saw some changes quickly and then the better changes after about 6 weeks or so. Good luck and try to adapt your environment so it is easier to stick with it.

Hi Gemma - They were unable to determine a precise underlying cause other than "auto-immune disease", but that's not for lack of testing/ trying/ looking. My primary care physician and I supplied them with all the medical records they asked for prior to me getting an appointment. She spoke directly with a coordinating neurologist, not me. But I know she told them about all my undiagnosed symptoms and illnesses in all organ systems. When I went there, my appointment was a time to "check-in" at the Neurology Desk. What followed was a consultation with two neurologists who also gave me an itinerary for five days of testing and appointments in various departments. I stayed in a hotel near the clinic and had nearly a full day's schedule for each day. It was all arranged prior to my involvement in person. It was like being on some kind of vacation tour where every moment is scheduled for you except for meals and sleep. I was kept quite busy and got exhausted. But, it's the Mayo Clinic so they know that might happen and they have people who can assist you in getting to your next appointment or test with wheelchairs or whatever you need. It's a full-service kind of place. If you want more detail about my experiences at Mayo, I'm happy to answer any questions, just PM me.

I also had the full paraneoplastic panel of blood tests done because one neurologist was convinced that was the only explanation. All mine came back negative. If there's a question, have them do the blood tests.

I can't speak to whether any of the Mayo Clinic locations is more fully equipped to evaluate Dysautonomia than any other, as I only ever went to the Rochester, MN location. I was there 5 years ago and I believe at the time that the Mayo Clinic website specified the MN location as where what they call the "Autonomic Neurology Subspecialty Group" was located, or so I assume because that's how my primary care doctor at the time and I chose the location. I just checked the website now and there is no particular location given. If I were wondering whether the location to which I'd been referred has an arm of that autonomic neurology subspecialty group, I would simply call and ask. They won't lie to you. Similarly, I believe that every location will consider all your conditions/ symptoms/ illnesses if you tell them when you're making your appointment what's going on with your body. In my experience, the Mayo folks wanted to know everything and wanted to send me from Neurology to Gastro to Endocrinology to.....all the departments they determined needed to see and test me so that they could make the best possible diagnosis of my health problems. It's great and it's also exhausting. Really just call them up and ask them if they have the autonomic neuro group and/or if, for example, you have a lot of GI issues, you can be seen by GI at the same visit as neurology (assuming you're making an out-of-area visit and it will be multi-day which is the only experience I have). Edited for grammar and also to add that I was in my mid-30's and undiagnosed when I went. I did not wait very long for an appointment -- about 2 months from initial contact which was made by my primary care physician (though that is not necessary). If anyone wants to ask me more specific questions about my experience, you can send me a message.

June Flower - Sounds like she has some of the same symptoms as I do, though mine have a different origin. Whatever else, please do what you can to counter anything other people say to her about her disease being "all in her head" or "only a psychological problem". Thirteen is such a challenging age to begin with and as everyone here would tell her if we could, her illness is very physical and very real. Undermining her self-awareness by telling her that her experiences aren't "real" is potentially as destructive as anything. I'm so sorry she hears that as a kid. It's challenging enough to hear that stuff as an adult. Good luck with everything. - Amy

Looneymom - Thank you very much. My doctors and I have been so focused for so many years on my symptoms but there's been no effort put into understanding the underlying auto-immune problem since before my Mayo diagnosis when I had a ten-day round of IV Ig which made no difference. Thanks for sharing your son's situation with me, it's given me something to think about and talk to my doctor about too. Docradmd - My tachycardia also improved with exercise but unfortunately exercise worsens my blood pressure, so I'm limited to nothing more than moderate exercise which is difficult since I miss it. The GI stuff is hard. I'm sorry to hear you're struggling with that. I too often wish it would all go away. But, if wishing made it so.... Good luck and thank you for sharing your experience. -- Amy

I look sick. I look very pale, kind of ashen at times and have almost bruised-looking areas around my eyes that don't go away no matter how much sleep I get (and they aren't from allergies). People who don't know about my illness often comment that it looks like I'm about to get sick (throw up) or "must be coming down with something". Then, since I don't sweat properly, in situations where it's hot and/or humid, I quickly turn so red in the face that it's more magenta/purple at my cheeks, areas on my neck. Also my head and neck get dripping wet -- like soaking the collar of my shirt, even though I'm just standing or (more likely) sitting there. That typically gets comments only from children so I assume it looks so awful that adults are too embarrassed to say anything. Hope that's helpful in some way. - Amy Edited to add: Oh, but I do not only have POTS which I see if your concern about your daughter's situation. I can't help you there, obviously, but I have autonomic dysfunction with GI, cardiac and peripheral neuro symptoms.

Hi - That's a lousy topic title but here's my question: Has anyone else had some kind of progression in their autonomic dysfunction that has changed their cardiac symptoms? I have auto-immune related autonomic dysfunction that affects multiple organ systems. My original diagnosis and clustering of symptoms was done at Mayo Clinic in MN. At the time my cardiac symptoms most closely resembled POTS and so I began the reommended treatment plan for that. Since my illness was sudden onset, auto-immune related, they advised me that with proper treatment and lifestyle adjustments, likely my illness (really sets of symptoms in three organ systems) would resolve over about 18 months as my immune system returned to normal following a massive viral load. That was five years ago. Recently my POTS symptoms became increasingly difficult to manage and I had five complete syncopal episodes (suddenly fainting with none of the light-headedness/ warning signs I usually get before my BP drops) that resulted in a series of concussions and ultimately post-concussion syndrome. Yuck. The post-concussion syndrome brought me to a different neurologist than previously, and anyway my POTS symptoms have always been followed in my current location by my cardiologist. Anyway after a series of trials with different medication combinations trying to keep my BP more consistently high (which is still low for a healthy person) so that there's enough "room" for a sudden drop in systolic that I don't faint completely, my neurologist posited that my cardiac symptoms no longer resemble POTS and for a trial period we reduced my very low dose BB that was supposedly treating my tachycardia. Indeed, I do not meet the criteria for POTS anymore with regard to tachycardia. So, here's my question -- has anyone else had their autonomic dysfunction progress such that their set of symptoms changed, particularly their cardiac symptoms? My neurologist confessed today that he is at a total loss now for how to keep my blood pressure consistently high enough to keep me consistently conscious. I've been homebound with a helmet on my head unless I'm lying down for seven weeks now and there's no end in sight. It's getting really frustrating. I'm on the verge of going back to Mayo, but as I do not need a diagnosis exactly (I know the underlying cause is dysautonomia) and my experience there taught me that they are terrific about diagnosis and testing, but as they can't follow up I'd rather not go back. Also, I'm now on SSD and no longer have the salary nor savings I did to help with the OOP expenses involved in going there. What I *think* I need is a neurologist who is more about being a clinician than into testing and who maybe has experience with other patients whose autonomic dysfunction progressed. But, really I'm asking you all for help since who else is there? For reference, my other symptom clusters have not changed and are still reasonably well managed by the same meds and lifestyle changes. Also for reference, my blood pressure does not response to stimulants anymore. For a long time I took midodrine every four hours and it was ok, uncomfortable but ok. More recently, my BP doesn't consistently nor predictably respond to midodrine, or other stimulants that my neurologist is prescribing off-label, like amphetamine salts (adderall basically) taken several times a day at max doses. Believe me, I feel effects of these medications in my head (ugh) and my GI tract (ugh) particularly, but careful monitoring and even graphing the readings shows that my BP isn't necessarily higher during the periods when those stimulants are most concentrated in my bloodstream. In fact, sometimes, my BP is at its lowest daytime levels during the medication peak concentrations. I'm on 0.1 mg Florinef daily and have been for 6 weeks, no BP benefits evident yet - but the side effects really stink. Well, any shared thoughts or related experiences would be appreciated. Thanks -- Amy

Hi - I have a lot of trouble with showering and especially with washing my hair (arms over head worsening the general trouble). I have tried taking lukewarm showers but it's both unpleasant and not all that helpful. Finally I've given up and I just sit. I can't fit a shower chair in my shower (bathtub) but I bought a plastic stool and use a rubber matt in the bottom of the bath tub. I can handle a warm (not hot) shower and wash my hair providing I sit except for turning around back-front once. As for drying my hair with a blow-dryer? Forget it. I don't. It's not worth the exhaustion it causes even if I sit while I do it. I bought one of those super-absorbant towels to get as much water out of my hair as possible and then it's air-dry. I know it's not very professional looking to show up at work with wet hair, but I'm on SSD at this point, so that's no longer an issue for me. Good luck - Amy

His office isn't so close to Philly, but I recommend Dr. Nicholas Tullo in West Orange, NJ (I think) -- check the list of docs as he is on there. I saw him when I lived in the area. - Amy

Hi Gemma - I went to the Mayo Clinic in Rochester, MN and had a full work-up for autonomic dysfunction in neurology as well as seeing doctors in gastroenterology and a neurologist who specialized in migraines. If your initial request/ inquiry for an appointment specifies which areas of specialists you need/ would like to see, they will arrange an itinerary of appointments and tests with multiple specialists -- at least that was my experience.

Ha! I had mine five years ago and I still cannot hear a certain Sarah McLaughlin album without feeling nauseated!!

Hi - So glad my longer-than-I-realized reply was helpful. I actually came here to tell you that one thing I wrote above is wrong/ has changed. But I'll tell you my gastro & exercise experiences too. First the error....I was just looking at Mayo's website because my current neurologist wants me to go back for a re-evaluation for my symptomatic hypotension. At my original diagnosis (five years ago now), my autonomic dysfunction gave me the cardiac symptoms matching POTS. This has gradually become not the case, as is evident in retrospect and my neurologist only thought to check this because I had so many serious syncopal episodes in a short time. Basically treating the tachycardia doesn't at all help my symptomatic hypotension so I'm getting sudden drops in BP almost randomly (only real pattern is that I'm always either standing or moving upright, walking, running....). I black out suddenly and now have post-concussion syndrome which is sort of amusing since I've never been one for the type of sports that usually result in concussions. Anyway that's why I was on their website this morning and I noticed that *if* your insurance doesn't require a referral, you can refer yourself now and you can do so via an online form or by phone. I don't know if they then require the same conversation with one of your doctors, but my guess is that they would. So, regardless of whether you start the process online yourself or your doctor does it by phone, I still recommend collecting as much of your own medical record as you can to make the process quicker. Ok, so gastro.... My dysautomnia was sudden onset and is my primary disease; it's thought to be auto-immune in origin. That's just for context. So along with the POTS symptoms I suddenly had, I also had GI stuff going on, migraine headaches and peripheral neuropathy. "Sudden onset" makes it sound as though I was just walking down the street a-ok and then fell over with all these things at once. It wasn't quite like that, but it was a horrible month. So, the key thing is that I had no prior GI problems, nor diagnoses. I had never even seen a gastroenterologist. So, part of my referral to Mayo Clinic from the very beginning included being seen by Gastroenterologists and having testing done by them as well. My GI symptoms mostly resemble IBS but not with constipation -- quite the opposite, including awful fecal incontinence. At Mayo I had an endoscopy, colonoscopy, biopsies taken on both the upper and lower scopes and then I had a bunch of tests related to the fecal incontinence that it doesn't sound like would apply in your case. Basically they were testing the nerves in my pelvic floor and various sphincters to try to see where the problems were exactly. Again, the reason this was all done in conjunction with my autonomic dysfunction work-up at Mayo is that the onset of my IBS symptoms coincided with the onset of my other symptoms of likely autonomic dysfunction. If you go to the general Mayo website and click on Rochester, MN location (since you'd go there for the autonomic stuff), then go to the Gastroenterology & Hepatology Dept, you can search by your diasnosis (IBS) and/or GI symptoms and there's a list of "diagnostic tests" that they say they typically do when that condition is the suspected diagnosis. You can see what's listed for your situation and then know if there's anything different there than what you've already had done. As for exercise, they recommended that I do a round of physical therapy as cardiac rehab. This was a tough thing to get any of my local hospitals (typically the location where cardiac rehab PT happens) to agree to since I had not had a "cardiac event" like a heart attack. Eventually my cardiologist got me into one. The reason they recommended this for me is that I had been very active prior to the onset of my dysautmnia cardiac symptoms and had been fainting without warning at times during my usual exercise. So, I had stopped prior to getting to Mayo and it was upsetting me. Mayo said if I did cardiac rehab it would basically allow me to exercise while all hooked up and monitored so that the docs at my local hospital's cardiac PT unit could monitor me and be alert to exactly what types of exercise I had to stop for my own safety and what was safer. Did I end up on a recumbent bicycle for what felt like ages? Yes. I did. And I had to wear a helmet. But I also figured out what my target heart rate ought to be while doing aerobic exercise which was completely different than prior to my POTS, etc. This meant I could return to *some* of my prior exercise preferences. Historically, for me personally, movement makes me feel better since the onset of POTS. The difficulties were how to get going when standing up felt so crummy and then stopping or even pausing at times was my real problem. Once I could get going, I felt much better; but as soon as I stopped I had to lie down to prevent from blacking out - sometimes with warning signs/ feelings, but often with no notice. This meant that I had to stop running outside, switch more to walking and choosing places where there would be fewer obstacles that would require me to stop moving (traffic, etc I lived in a city at first - not anymore). It also meant that I had to agree to wear a helmet, a medical alert bracelet and carry a cell phone at all times, if I was going to insist on going running outside, because I still sometimes fainted without warning even on meds, etc. Ultimately the safest way for me to exercise is on exercise equipment, specifically the recumbent type that's recommended for most POTS patients. I don't enjoy it and, depending on my BP before I start, I still often have to wear a helmet - but I have always had atypically uncontrollable hypotensive episodes for POTS. Or so I've been told. BUT I have also taken Irish dancing classes, pilates and yoga. I could still go running outside in certain situations, hike, etc. But I had to know that I would feel totally unwell, even puke from vertigo before I got going and I absolutely had to wear my helmet and took lots of precautions to before and after. Most importantly I never ever exercised strenuously alone. This paragraph is in the past tense only because at the present I am not allowed to exercise at all, not even walk my own dogs, because of the changes in the cardiac symptoms of my autonomic dysfunction. But, I fully plan to get back to exercising again. It's good to note that I didn't get those concussions because I was "cheating" and not wearing my helmet when I've been advised to do so. Exercising is really hard to start with POTS because you feel so crappy at first and it's hard to stay upright sometimes, but for me, and I'm only saying this about myself, once I got moving, after a while, I felt the best I ever felt. The most important thing of course is to be safe. This concussion stuff is no joke. I'm greatly improved from where I was six weeks ago with concussion issues lingering in my cognitive function, but I still have some problems. So, you know, definitely, definitely get your doctors' input before you go changing anything about your exercise. (For the record I do own a recumbent stationery bicycle.) Hope this helps! - Amy

Hi - I'm sorry I don't have anything useful to say about preparing for going off your meds, et al prior to the QSART and a Tilt. I'd be scared too. Your plan to get things done ahead of time so all you have that week is the testing is a great one. Do whatever you can that soothes you and keeps you calm -- you know, as long as it doesn't require you to stand up or move around except like a snake on the floor. The best part about it is that, with not even too much time passing, it will be over and done. I'd try hard to focus on how relieved I'd feel after it was over. For me, sometimes, thinking enough about that feeling of relief that I know I'll get once a tough test or time has finished is enough to keep me mentally together and calm before it's over. If that makes sense. That purple TST is a real trip, isn't it? Kneecaps, tops of toes....if only it weren't so blinking uncomfortable, it would be curiously interesting. Good luck!! - Amy

Hi - I too take low dose of beta blocker (Metropolol 1/2 a 25 mg tablet twice a day) for tachycardia, but the thing that makes me feel best in terms of heart rate is actually movement. I know it's strange, but my heart rate is lower and I am more comfortable in that regard, when I am moving than when I am standing still. So, for me, the real trick is to be able to immediately sit or even lie down after movement like exercise. If I'm walking, I need to keep going or march in place at corners with stop lights etc. It looks absurd, I am certain, but that's the best thing for me. Lately my problem is not so much tachycardia as hypotension so I'm not allowed to go out walking alone and I have to wear a helmet everywhere I'm upright even inside my own house due to too many syncopal episodes in which I've gotten concussions. So, really I'd say ask your doctors before you do any exercise/ lots of movement and maybe even see if they will prescribe some type of physical therapy wherein your heart rate and BPs can be monitored while you exercise and when you stop. That way you will have some data to go on. Good luck. - Amy

I used to live in NYC and now live 2.5 hours north of the city, but in NY. My experience in NYC was that the only doctors working in POTS were more research-oriented than clinically oriented. As you mentioned with Dr Kaufmann (and there are two others I know of), they take patients with specific symptom sets or known causes of their POTS and only those types of patients. That's super frustrating for anyone who doesn't fit into one of their categories. I saw Dr. Weimer solely for testing - ie, not as an on-going patient. I was sent to him by another neurologist who was theoretically treating me. Oddly, I ended up mis-diagnosed in spite of Dr. Weimer's specialty and his doing my autonomic testing, but I don't blame him in any way. I don't only have POTS; I have other systems affected by autonomic dysfunction so it's complicated. I can highly recommed a cardiologist who is in New Jersey though -- if that helps. I used to take the train and a taxi out to see him when I lived in NYC (or bribe a friend to drive me when possible). He's listed here on DINET - Dr. Nicholas Tullo in West Orange definitely helped me with my POTS symptoms a lot. But I only knew to seek him out (and found him on this list) after I'd been diagnosed at the Mayo Clinic. Dr. Tullo is well worth the trip to Jersey if you're in need of a cardiologist who is very familiar with and treats a lot of POTS patients. Good luck.

Hi - Unsure if my response will help you, but I don't mind sharing my Mayo Clinic experience, for what it's worth. In summary, they gave me diagnoses (all with the same underlying cause auto-immune related autonomic dysfunction), their best guess prognoses and suggestions for possible treatments. But here's things in more detail, including the important money question. First the logistics bit - your primary care doctor has to be the one to get you the appointment. Mayo will only deal initially with one of your doctors. In my case, I used my primary care doctor because she was caring, smart and had been referring me to all the different specialists, trying to get me some help. I did the initial research though - primarily through Mayo's website. I brought her the phone number and the Neurology contact people's names so she could make the initial calls. It goes down like this: your doctor contacts the Neuro group at Mayo and they will tell him or her what information they need or want to determine if they think they can help your case. Once they have reviewed the info, mostly test results, they will tell your primary care doctor if they are going to give you an appointment. You can't just call up and get an appointment. After that it can vary how long it will take depending on a bunch of things. To reduce the amount of time it would take for my doctor to gather any information the Mayo neurologists et al requested, I made a huge packet for her. I collected a copy of everything I could. Basically I went to the different specialists I had seen and more or less (depending on the office) made an appointment with the receptionist/ medical records person/ nurse -- whomever and I made sure I had a copy of all test results, labwork, MRI results (get copies of the films too because if you go to Mayo they ask for original films on DVD or xrays and if you do it at the same time you won't have to drag yourself back again). I tried to compile as much information as I could so that if the Mayo doctors asked my doctor for something, she had it already and could fax it right to them. Doctors get busy and if you do this part yourself, it subtracts time from the process, because your doctor isn't telling their staff to contact other doctors' staff or hospitals or whatever to get copies of records, etc etc. So the Mayo doctors and your doctor exchange information and then the Mayo doctors decide if they can help you and if yes, then your doctor gets a call and you get a letter (at least I did) that says they are going to give you an appointment and you'll get a phone call telling you when that appointment will be. In my case I got that call about two weeks later that gave me an appointment six weeks from that day. So I guess all told, it was two months from the point when Mayo neurology determined they could help my case possibly/ it was worth their while to see me. Once you have an appointment date, you have to make arrangements to get there. They have an in-house travel agency sort of thing, but I just booked the tickets myself and called a hotel in Rochester. Unless you are medically unstable (ie, you would basically be arriving in an ambulance or something), you are not an in-patient at Mayo. So, you need a hotel room. Airfare and hotel are costs you have to pay out-of-pocket. Also your food, though if your situation is anything like mine (required Gastro stuff), you'll be fasting most of the time or on clears anyway. When you check in, they hand you an itinerary of sorts. I met initially with a neurologist for about 20-30 minutes tops. Then you follow your itinerary. It tells you where to be when and so on. I had five days of feeling like a lab rat running around from test to test, lab to lab, etc. You are kept very busy - at least I was and there wasn't much, if any, downtime between tests so sometimes I felt utterly exhausted. Luckily this everyone there understands that and they are great about getting you wheelchairs from one test to the next, if you need it. But remember, there will be no wheelchair to your hotel, even if, as my hotel was, it is connected to the Clinic via a mall and network of hallways. It's kind of an unusual place. Honestly, I felt awful almost the entire time. As in, much more awful than I had before I went because of all the testing. This might not happen for you if you don't have to do gastroenterology tests that require fasting etc. I start out hypovolemic and had some dehydration problems, but they would give me fluids after some tests at the Clinic. My more important point for this is that it was really challenging emotionally as well as physically at times. A wheelchair ride can help you, but for me at least, bringing along a supportive, caring friend was essential to getting through it. If you can, I highly recommend bringing someone with you whom you trust and who is very supportive of you. After they have all the test results and labwork and so on, you meet with the doctor or doctors again and they review everything with you and then explain their diagnoses, the prognosis as best they can make based on their experience with other patients with similar conditions and sets of symptoms. BUT, and this is the most important thing I'd say, they do not have any ability to refer you to physicians near you who treat the diagnoses they give nor the treatments they recommend. They also don't necessarily recommend specific medications for your conditions, though I did get a list of recommendations. It is really important to remember that you are their patient for five days (or that's how long it was for me) and that is all. Afterwards, they aren't your doctors and so it will fall on you (mostly) to explain what they recommend for your treatment to your doctors at home. Even if you have an interested doctor (and what Jackie M said about doctors taking much greater interest once you have this stack of papers from Mayo to show them is absolutely true), even if one of those doctors calls the phone number they give you if any questions arise, they won't necessarily get much from it. So, if your local doctors don't have much or any experience with autonomic dysfunction, it might not be the golden ticket, but it definitely helps. I'm not sorry that I went. I had to go. I had a caring, great primary care doctor but was getting bumped around from neurologist to cardiologist and an array of other specialists with a long list of different diagnoses and I was only getting sicker. Mayo put a stop to most of that. But, I'll be honest it's been five years since I was there and it is still a struggle to get medical care because I'm typically the only patient with autonomic dysfunction my neurologist/ cardiologist/ gastroenterologist has ever had. I'm quite seriously considering moving closer to a medical center with physicians with more experience with autonomic dysfunction (mine affects multiple systems). As for insurance.... on that Mayo is absolutely great. At the time I went I was still on long-term disability from work with insurance through Aetna. Mayo has an entire department that will help you get your insurance company on board. I had excellent benefits at my former job (I was in medicine) but I still had a lot of out-of-pocket expenses. The airfare, hotel and food like I wrote above - but beyond that I did end up with an out-of-pocket expense of $5700 for medical stuff. That's peanuts compared to what the five days cost, but it didn't feel like peanuts to someone on disability at the time. Mayo will do payment plans for you if you need. I ended up taking it all from my savings just to be done with it. But, I feel completely confident that Mayo got my insurance to pay for absolutely everything they could. One final thing, the Clinic is not open Saturdays and Sundays. This means that if your initial appointment is on a Thursday (as mine was), and they have you scheduled for five days worth of tests, you will actually be stuck there for 7 days and you might not be able to fly out that last day, depending on the time of your appointments. So, ultimately I was there for longer. But it's just luck of the draw on appointment date and then everything else depends on how many tests they want to do on you. Hope this is helpful. If you have any more questions you think I could help you with, ask away. Good luck!!