Experience with Mayo (& not the condiment)
Updated: Apr 9, 2019
After meeting and interviewing Dr. Goodman from Mayo Clinic at the Dysautonomia International Conference last June, I decided to apply to get into Mayo. I'd felt like I was at a standstill with my doctors at home, my current treatment wasn't helping much, and I just felt like there was more going on than just POTS. I was right.
I called Mayo periodically over the Fall and Winter months, being told Dr. Goodman was booked out for over a year, but then, I got a call from an Arizona number January 3rd. It was the Mayo Clinic scheduling office to book my appointment! I figured the appointment would be sometime in 2020 but to my surprise, they offered me an appointment the following month! I cleared my schedule.
They booked me for a week's worth of appointments and starting February 18th, I met with Dr. Goodman as a patient for the first time. To prep for the week of testing, I had to hold some of my meds a week prior and others for a few days or hours prior. I was not allowed to do much physical activity the week before because I was off my beta blocker which keeps my heart rate from jumping so high when I stand up and move around. Being off of this med in particular was quite difficult once day 4 hit. I'd be lying in bed, heart rate hanging around the 60's or 70's and then I would stand up and it would quickly escalate into the 130's. One day, I even peaked at 196 from just getting out of bed. Everyday, I felt like I was on a roller coaster.
Come testing time, I was off all my meds. The first day, I wound up in a wheelchair with a horrendous migraine puking with sunglasses on, unable to escort myself anywhere because I was a faint risk and so dizzy. It was some of the worst pain I’ve ever been in and when you lose control of your body like that, it’s very scary. Thankful my husband was there to help take care of me.
Over the course of the week, I had blood work involving an extensive ANA panel (totaling 11 vials of blood), a catecholamine test, 24 hour urine collection, skin punch biopsies on my thigh and calf, and the standard autonomic testing involving the Tilt Table Test, QSART test and breathing test (Valsalva maneuver). I was unable to complete the catecholamine test the first time around because I was so weak and the symptoms I listed in the previous paragraph were happening. The nurse was very kind to me throughout the whole process and 3 days later I was able to complete the test and give them the data they needed.
By the end of the week, I had some diagnoses confirmed, gained a couple new ones, and collected some potentials or suspicions to look into further. All will be very helpful in fine tuning out my treatment plan and in knowing what the next steps may be.
Dr. Goodman confirmed that I still have POTS (Postural Orthostatic Tachycardia Syndrome), but also figured out what type or should I say types of POTS I have. I must've won the lottery because I have two types: hyperadrenergic and neuropathic. When you have both of these types, there’s almost always an autoimmune cause so my blood work focused heavily in that area. A couple autoantibodies were elevated and noted. My doctor strongly suspects that I have Sjogren's, an autoimmune disease he thinks could be potentially causing my POTS. We will pursue further testing to confirm. I was also diagnosed with MCAS (Mast Cell Activation Syndrome/Disorder) and autonomic neuropathy (peripheral and likely small fiber). Modest joint hyper-mobility was noted as well. I'll probably get into the specifics of the MCAS and other implications of these diagnoses in another post.
I’ve started up some new meds and a low histamine diet to try and treat the MCAS and once we see how I do on all of that, we can then adjust and/or add meds to help the autonomic stuff and migraines. It's so nice to have some more answers and things to look into and try (treatment wise). I'm so thankful for this experience!
Last but certainly not least, I want to take a moment to rave about Mayo. The doctors, nurses and any staff I came in contact with were all so friendly and seemed to genuinely care about the patient. It was such a comforting feeling amidst a rough time physically. They did such a thorough and thoughtful job and really listened to and addressed all of my symptoms and concerns. I was very pleased with the teamwork and collaboration that happens there as well. Getting into Mayo and having this opportunity was truly a gift.