Dysautonomia Awareness Series: Stephanie's Story

Blog written by: Stephanie McDonald

It was January 24th, 2021, the day before my Autonomic Function testing. I was watching my mom sleep, with Mrs. Doubtfire playing in the background, I was sweating and freezing to the touch. My body was covered in psoriasis, covered, the nausea was unbelievable, and my heart was pounding. I had been off my medicine for 24 hours, and I felt horrific; as my face started to clench, I knew that I wasn’t just suffering from POTs, I knew it was more. Please be Parkinson’s, please be Parkinson’s, I said over and over in my head; I can handle Parkinson’s I told myself. As long as it’s not Multiple System Atrophy or Lewy Body Dementia. And as I watched Robin Williams on my television screen, I couldn’t help but think, he passed on my birthday, and he didn’t have Parkinson’s, they later found out it was Lewy Body, and all I could do was sob. I knew in my heart the answers I would get the next day wouldn’t be what I wanted to hear...

Within an hour of my realization, the heart racing was getting to be too much. I went to check my blood pressure and the cuff would just error and then pop off. I was drenched in sweat, at the same time my mom was trying to warm my blue hands and toes. The left side of my face was frozen and pulling upwards, I looked like a caricature. The blood pressure cuff popped off two more times, and finally my mom said she was calling 911. That was my first full blown autonomic attack, or real glimpse of the failure.

The hospital had to give me back my medicine, but I refused to reschedule my testing. I couldn’t go through that again, if I did, I wasn’t sure that I would survive it. So I went to my Autonomic Function testing expecting to get some false negatives due to me being back on the medicine, and to my surprise, my results were bad, even with the medicine. My feeling from the day before was right. By the time I got home from the test my, MyChart, already had the diagnoses of Noradrenergic Dysautonomia , Baroreflex Impairment Phase II , and Orthostatic Hypotension with reactive Tachycardia. I needed to come back in for more testing. I couldn’t believe it, at 31, I finally got answers to health issues that had plagued me nearly 15 years. Those same issues, that many doctors told me were all in my head, well they were all in my head, I had Dysautonomia, which affects your autonomic system, your brain. It was my head all along…

My neurologist scheduled a meeting with myself and my Mom to discuss the results and next steps. My results were abnormal, so abnormal, my neurologist wasn’t sure how I stayed conscious at times. During my Tilt Table Test, my supine blood pressure was 84/46 and upon Head Up Tilt, my blood pressure dropped to 55/40. During the Tilt Table my heart rate went from 113 to 179. I needed to come in for some biopsies to check for Small Fiber Neuropathy and Parkinson’s. Every step of the way I always would ask my neurologist, can we rule out Multiple System Atrophy and Lewy Body, and he would always ignore my questions. I kept praying for Parkinson’s.

Finally my biopsies came back. I had pretty severe Small Fiber Neuropathy and no Parkinson’s. I had tremors, balance issues, memory issues, I had all the symptoms of Parkinson’s. And finally the doctor answered that question I kept asking, and no, we can’t rule out Multiple System Atrophy. I had Multiple System Atrophy- Parkinsonism. And the Noradrenergic Dysautonomia, that is Noradrenergic Autonomic Failure. How could this be happening to me? I’m only 31, I’m healthy, I always ‘did the right thing’, and here I am, with what feels like a vicious death sentence.

Dysautonomia, a broad term for dysfunction of your Autonomic Nervous System, can refer to a variety of different Autonomic Dysfunctions including, POTs (Postural Orthostatic Tachycardia Syndrome), Neurocardiogenic Syncope, Multiple System Atrophy, Baroreflex Failure, Familial Dysautonomia, Orthostatic Hypotension, Autonomic Failure, and more. Your Autonomic Nervous System consists of what your body does without thinking like digest food, swallow, sexual function, and more; mine was failing. Very rarely do people get diagnosed with Autonomic Failure and Multiple System Atrophy, and for people my age it was almost unheard of. With Multiple System Atrophy, people usually have 5-10 years left of life after diagnosis, I’m 31. MSA is like Parkinson’s but far more aggressive. It’s aggressive. So aggressive. How me? Why me?

With diseases like cancer, people are familiar with it, they have an understanding, people can get better, there’s hope. Having a neurodegenerative disease, that hope and understanding isn’t there as often. People try, but there isn’t as much information, not as many people to relate to, and not nearly enough research. And the outlook isn’t good.

It’s hard to explain that sometime in my near future, my ability to do things like walk on my own, will go away. And accepting it myself, is even harder. It makes me mad that I was sick for so long, and this is my answer. I wonder if people listened sooner would the prognosis be so severe?

Navigating such grim diagnoses, in our new Covid19 world, has been so isolating. I can’t risk more illness, my body is fighting so hard, so being a normal 30-something year old is not an option for me anymore. I asked close people to isolate, many responded with that’s selfish of me to ask. I told others my diagnosis and they said they couldn’t be in my life anymore, it was too hard for them to see. The person I thought I’d marry wanted to be with the me from two years ago, (I know she was healthier), I wanted to be her too, but she is gone. A lot of the people I thought would rally around me, seemed to quickly leave my side.

Where was everyone going? I didn’t feel like a warrior, I felt like a failure. I had so much more I wanted to do in life, and here I was feeling alone and bad for myself. I was mad. I felt betrayed. I wanted to be healthy. I wanted to be normal.

It’s taken many months to “accept” my diagnoses. Yes, I have Dysautonomia, some of the worst types. The ones I prayed not to have, for hours, days, weeks. I still got them. Yes, my diseases are aggressive, but so am I. Months ago, when all this started I said, I can’t handle a Port or a PICC Line, that’s an absolute no for me, and Tuesday I go in for my PICC placement. By accepting all of what’s happening, I’ve also, accepted this is happening for a reason. Not to punish me, but hopefully to raise awareness and help others. And I’ve accepted that I’d take a Port or a PICC Line over leaving my family and loved ones!

Most of my days with Dysautonomia are filled with what feels like one hundred different emotions. There are some days I don’t think I will survive, but somehow I always do. I’d be lying if I said what’s to come doesn’t scare me, it does, more than anyone knows. But I’ll keep sharing them all, the good and the bad, to bring purpose to my pain, and comfort to another’s!

I watch Robin Williams almost everyday now, he brings me comfort. I know his end days weren’t constantly filled with happiness and laughter, but most peoples aren’t, mine aren’t. Real life isn’t always laughter and happiness. I’m still angry, angry that this disease continues to ravage the lives of its victims and their families, almost silently. I’m angry that research and treatment are so limited. And I’m angry it’s happening to me. With that anger, I hope I am bringing awareness. Awareness for the people who fought this difficult disease before me, for those who fight alongside me, and in hopes that one day, no others have to fight this disease.

You can follow along with Stephanie's journey on Instagram at @steph_s_m!