OK OK, you probably want to know the technical stuff by now and I finished the background flashback, which was pretty good considering brain fog is real. My first Neurologist who specialized in Dysautonomia, diagnosed me in 2018 with having Neurocardiogenic Syncope. POTS was floated initially but only borderline in 2009-2012. With the possible POTS diagnosis, I remember a Cardiologist at John's Hopkins giving me a HUGE booklet and told me to eat more salt. Thats it. Our medical system has to do better. My previous Neurologist was really old school with paper files and all. He also gave good advice and my appointments were easily 90 minutes long. However, it all came to an end when I was notified that he stopped taking private insurance and I couldn't afford his rate out of pocket. The end of an era. So this meant that I had to shift gears and try to get seen by a competent Dysautonomia Specialist and my search lead me to the Mayo Clinic in Arizona.
DAY 1 Testing
Autonomic Reflex Test
Epidermal Nerve Punch Biopsy
The drive to the facility in Scottsdale from Phoenix was scenic even though the traffic was kind of aggressive but as a native New Yorker, I can adapt to traffic except L.A. That mess was insane. The drive was about 45 minutes each way. The closer I got the Scottsdale the hills became more red and deep orange. This trip I wasn't there for sightseeing but if I was, I could have driven around all day.
The actual facility was nestled in these reddish, orange hills off the main road with large Cacti that greeted me along the walk from the underground garage to the front door. Though my daughter accompanied me for the trip, I didn't bring her with me because of Covid regulations. Later I found out that I could have but she stayed back with the family we were visiting for the day. In order to get in I had to have my temperature checked and show my negative test results from the day before. The front of the building was glass to maximize the glorious views. Again, this helped me take my mind off of the long day of testing ahead.
Autonomic Reflex Test
I have a version of this test with my last Neurologist. His was very bare bones but effective. The doctor at Mayo was more advanced but measured the same things, at least that is what I thought. Here I was reacquainted with my old foe, the tilt table. I was strapped on a table like Frankenstein's Monster. I had my vitals measured by a blood pressure cuff and a pulse oximeter on my finger to measure my heart rate. I believe that there was a strap around my chest somewhere, but I don't remember for sure...BRAIN FOG. My vasovagal response was tested. I didn't pass out but I surely saw stars. Basically, I had to blow in something that reminded me of a spirometer. I had to do this in regular intervals where I had to breathe out as hard as I could and then hold my breath. This is where I saw the stars. However, since I didn't pass out I went on to the next part which was the tilt table portion.
The purpose of this test was to replicate me sort of standing and my heart rate, temperature and heart rate were monitored. While my last Neurologist did a full 90° tilt, here they did only 70°. I thought that it was odd because I never stood less than 90° on any given day. Unless I am suffering with an episode. Still the Doctor confirmed that this was enough to provoke a response. Result: I didn't pass out either (thankfully) but I did get close a few times. I felt horrible, worn out and upset afterward. Why was I upset? Because I came all this way and waited all this time and my body didn't perform. The doctor needed to see that my that there was something going on but the entire trip I was tired but I never has a significant episode. I was disappointed but hope that enough information was gained to confirm a diagnosis. My pre syncopal episodes usually start like this, I get hot like a sauna fully clothed and its immediately followed my extremely irritable, angry and then emotional. Like tears of joy, anger or both? I dunno. Then I start to worry. In the real world, not strapped to a table at a 70° angle, I would have laid down to halt or slow the syncope. I hate what comes next because I don't actually faint fully...usually. My vision does out and sounds get muffled. It feels like a dementor is sucking the life out of me and I am still very conscious. Very terrifying because I can't communicate at all. I think my body has a fail safe to stop the syncope if possible which is why I didn't faint on the table. I suffer the loss of blood to the brain. It makes sense that my body wants to save itself. Mind you that was the first test.
After a brief break to gather myself, I checked in for my EMG test. I read very little about it before hand and I think that saved me from running into the desert screaming. LET ME TELL YOU I WAS NOT READY. I was greeted by two very sweet, kind and welcoming ladies. I guess they had to disarm me for what was to come next. This experience is so bad that I blocked a lot of it out of my memory so the details will be sparse. Just know pain, wanting to kick both technicians like I was Chun Li and feeling bamboozled. These sweet ladies proceeded to shock my hand, arm, leg and foot on the left side. I tried very hard to be calm but it was painful. It also included a needle...I forgot to mention that. I do have pins and needles and numbness the precede an episode that occur in my legs, both hands and my face. No they didn't zap my face. I limped out of there looking for respite but due to the condensed schedule there was one final test to endure.
Epidermal Nerve Punch Biopsy
Upon entering this final room of the day, I was once again greeted by sweet ladies that reminded me of kind aunts. They complimented me and soothed me. I did appreciate it after the day that I had endured. It was the calm before the storm...kind of. They had me pick a leg and then they selected two areas to biopsy. Yup BIOPSY. The area, on my hip and just above my ankle, were cleansed and administered a local anesthetic. While talking in soothing tones, Auntie #1 took a hole puncher contraption, it really looked like a looseleaf paper hole puncher, and removed a few layers of the skin that included the nerves. It wasn't too bad but it left ugly scars.
Torture over, I realized that I should have had my daughter come along. I was spent and needed to rest but I still had a 45 minute drive a head of me. I was advised that evening that the doctor saw my results and ordered a repeat tilt, a catecholamine test and extensive blood work in addition to the office visit, the next day. Stay Tuned.