Mayo Clinic

I wasn't sure if I'd even be able to get an appointment, but luckily it all worked out and I was able to get one in just six weeks! There is a process to requesting an appointment. When I called to ask about it, a really helpful receptionist gave me some tips that I want to share with you!

She recommended that I don't list suspected illnesses (for example: POTS, IBS etc.) but instead to just list the symptoms. Apparently, if I had listed a condition I'd automatically be put at the bottom of a long waitlist for those specific specialists (I found out when I was there that the POTS waitlist is over a year long). Instead, she said to request "Internal Medicine" and solely list all the symptoms that I was experiencing and that if I was approved I'd be provided a 'care team' to address all the issues. Her advice worked and I was told within a week that I was approved! 

My mom and I flew up at the end of April. We were told to plan to stay for one to two weeks, but only ended up staying about a week and a half. This is important to note -- since they don't usually know doctors' availabilities until the week of (or even day of in some cases), they aren't able to tell you exactly how many days to plan to be there for, which makes it tricky when it comes to flight and hotel reservations. We booked everything on points for more flexibility. Also, just thought I'd mention that we opted to stay at the Marriott Residence Inn which is connected to the clinic via an underground tunnel. We chose this hotel over others because it had a kitchen which came in handy, so I'd recommend that. The tunnel is very cool and connects to many different hotels and even restaurants, which makes it easy to get to and from your appointments without having to brave the chilly Minnesota winter! 

On the first day, I got my blood drawn in the morning and afterward met with Dr. John Davidson. We went over my symptoms and care plan for the week ahead. Unfortunately, the blood draw wasn't as quick and easy as expected. The phlebotomist couldn't find my vein, so she stuck me a few times and dug for it, finally found it, and more than halfway through the draw I passed out. I wasn't laying down at the time, so luckily my mom was there to catch my head. After I came to, I went off to my next appointments which were an EKG and an echo. At the end of the day, I was scheduled to pick up a stool test that I was supposed to return the following morning. 

The second day started with a blood draw since we weren't able to get everything they needed the day before --this time it all went smoothly. Afterward, I had a Thermoregulatory Sweat Test -definitely the most interesting test of my entire time there, to say the least. I was told I would feel like a quote "rotisserie chicken cooking in an oven" -sounds lovely right? I was coated with a gold powder that was supposed to change to a purple color when I sweat. I was then rolled into a hot chamber that was slowly increasing in temperature. Photos were taken during the process to document the results. If you're claustrophobic this is definitely not the test for you lol. I was a bit worried about the test considering I don't do well in heat, especially with the symptoms I was already having. But since you're laying down the whole time I was fine. I just pretended like I was on a beach for 45 minutes. Scratch that -- I pretended that I was a purple oompa loompa on a beach. I really wish I could have gotten a photo for your amusement lol. The results indicated possible "limited distal small fiber neuropathy." This made sense to me considering the numbness and tingling I had been experiencing in my extremities. 

After getting back from the sweat test I found out that my stool test came back positive for E.Coli and C.Diff (fabulous). I was given antibiotics and went to bed. It was a Friday so my next appointment wouldn't be until Monday.

Today was the day of my autonomic reflex screening. 

The first was the quantitative sudomotor axon reflex test. This test checks how the nerves that manage your sweat glands respond to stimulation. A small electrical current passes through capsules placed on my arm, legs and feet. I was told that I might feel warmth or a tingling sensation during the test -to be honest it was a tad painful but nothing intolerable, more like you're being poked with a needle over and over lol. The test took about five minutes.

The next was a test to measure how my heart rate and blood pressure respond during exercises such as deep breathing and forcefully breathing out. This is called the Valsalva maneuver. This was a piece of cake. 

The last test was the tilt-table test. This test monitors the response of blood pressure and heart rate to changes in posture and position. It simulates what occurs when you stand up after lying down. You lie flat on a table, which is then tilted to raise the upper part of your body. Typically, blood vessels narrow and heart rate increases to compensate for the drop in blood pressure, but not by too much. Upon tilting, my heart rate increased over 30bpm and instead of my blood pressure dropping like it's supposed to, it increased -indicating a specific type of POTS, Hyperadrenergic POTS. During the tilt, I felt nauseous, weak, and lightheaded, but I was strapped to the table so there was no fear of falling if I were to have fainted.

This day was definitely the worst day of them all. I had an endoscopy to rule out any GI issues contributing to my symptoms and I actually woke up in the middle of the procedure. Given that it was an endoscopy, when I woke up I started choking on the tube down my throat. (I'm also delirious at this point since I was still feeling the effects of the anesthesia, so I had a hard time continuing to breathe through it and remain calm and the procedure had to be cut short). I had been put to sleep about three times in my life a few years back and never had an issue with anesthesia so I'm not sure what happened there --even more puzzling, I proceeded to have a colonoscopy about six months later in Raleigh and also woke up again mid procedure (luckily that wasn't as stressful) so maybe I now have issues being put under? If anyone has any ideas as to why, please send them my way lol! 

Today I had my last gastro exam which was a gastric emptying study. This included...

Scintigraphy: It involves eating a meal of eggs and toast that contains a small amount of radioactive material. A scanner that detects the movement of the radioactive material was placed over my abdomen to monitor the rate at which the food left my stomach.

Breath tests: For the breath test, I ate food that contained a substance that my body absorbed. Eventually, the substance could be detected in my breath. Samples of my breath were collected over a few hours and the amount of the substance in my breath was measured to determine how fast my stomach empties.

The tests were definitely interesting. I'm not sure how I felt about eating radioactive eggs, but ya know, I suppose I've eaten worse lol. The test also required me to drink a carton of milk along with the eggs and toast which just made for an interesting combo. My stomach did hurt a couple hours into the test, but overall it was very simple! My "six hour small bowel transit time" was a low 0.1% (the mean is 44%), but other than that they said everything else came back in normal ranges. 

One of my labs showed an elevated cortisol level upon waking so I was scheduled for a more thorough blood test to track my cortisol levels for an hour while being given a synthetic hormone. This test was called the ACTH stimulation test. Luckily my results showed that I was back in normal range, showing no signs of Addison's Disease.   

I then waited for the results of all of the tests that I had done since I got there and had follow-up appointments with a few of the doctors. I was ultimately diagnosed with Hyperadrenergic POTS and was given beta blockers to start taking immediately. 

I am very glad that I went to the Mayo Clinic. It would have taken me months to see all the specialists that I saw and complete all the testing that was done. Within about a week I left with a diagnosis and a path forward, which was what I was after. I also think that it has been helpful having a diagnosis from such a revered research hospital. I never have anyone question whether or not the diagnosis is 100%, or suggest getting a second opinion -which also makes it all the more worth it. Now, if you already have a POTS diagnosis from an autonomic specialist that you trust, or have an autonomic specialist near you without a long wait list, I don't think that it's completely necessary to go to the Mayo Clinic for treatment and/or a diagnosis. The doctor that I started seeing afterward, Dr. Sameh Mobarek in Raleigh, NC, is even more knowledgeable about POTS than some of the doctors I encountered at the Mayo Clinic, and does many of the same autonomic testing that I had done. I would have just seen him, but at the time he had a long wait list and I knew I couldn't wait that long to figure out what was going on. **For details on which doctors I saw at the Mayo Clinic and am currently seeing, check out this page: https://nicoleohara.com/doctors.

In the spirit of being transparent, I wanted to talk about the cost of going to the Mayo Clinic because that was also a concern of mine. Thankfully, under Spectrum News I had a great health insurance plan which covered the large majority of the total. After insurance, I had $1,879.98 left to pay. To put it in perspective, without insurance the total would have been $13,582. So I am very very thankful to have had health insurance that covered so much, and also hotel and airline points to cover the cost of the trip. 

I know this was a lot of information, so if you have questions about anything that I didn't cover here, don't hesitate to contact me!