Dara’s Story: A Long Road to Diagnosis
My name is Dara and I am 45 years old. Everyday, I wake up and for a split second, I feel “normal.” No Pain, no nausea and then….BAM! Here comes the vibrations in my body, the lightheadedness, the nausea, the light hurting my eyes, the tremors. It’s like a cruel joke. I remember the days when I would walk well over 10,000 steps a day, climb stairs without loss of breath, wake up and just go without preparation. Now, just getting out of bed is an entire project within itself.
Prior to being diagnosed with Dysautonomia and POTS, every test would come back “within normal limits.” I would think, there is no way this is “normal.” I would constantly have syncope or presyncope, my chest was always hurting. My arms and legs would start trembling, then the spasms. I literally looked like I was having a seizure yet every test would return: “within normal limits.” The pure frustration is beyond words. Every doctor would downplay my symptoms and suggest therapy, xanax, a hormone imbalance, UGH it was ridiculous. I thought doctors were supposed to heal and help, instead they are making me question my own sanity. The rollercoaster ride of never having answers, not understanding what is happening to your own body and we look to doctors for the answers not remembering that they are human too.
Finally in May of 2021, I met with a rheumatologist. This doctor was different. He listened, he observed, he asked questions but the biggest moment during that first appointment for me was when he looked at me straight in my eyes and said “You are not crazy. You have a real medical condition and or conditions. We will figure this out.” I must admit, I was skeptical but had hope. An entire multitude of tests started as well as referrals to neurologists, cardiologists, movement disorder specialists, etc. The cardiologist he referred me to has his own Autonomic Dysfunction/POTS facility. The only one in my state. When I had my first appointment with the cardiologist, he immediately had me do some tests. He then stated, “You have dysautonomia.” Of course, I had never heard of it. So, to even pronounce it correctly was a challenge. More tests followed and I was also diagnosed with POTS. I finally had a “name” for what was happening to me. I instantly felt a weight lift, I wanted to scream to the world: SEE??! I’m Not crazy! I’m not just some extra hormonal chick that wants attention! Stop trying to just medicate to medicate and actually find the cause of illness even if it’s invisible.
I started researching and found The Dysautonomia Project. Immediately purchased the book and couldn’t wait to start reading. It helped my family understand what I was going through as well as my PCP. I carried that book with me whenever I went out and eventually gave the book to a fellow invisible illness sufferer. She had been diagnosed with dysautonomia but had never heard of this book. My hope was that it would help her to the magnitude it had helped me.
Since receiving my diagnosis, I’ve researched and been victim to this invisible illness that is not well known in the medical profession. Just to have a simple procedure done takes preparation and an understanding for this disease. I’ve had to cancel multiple procedures because the staff does not understand POTS and Dysautonomia. It’s extremely sad that in 2022, people cannot get appropriate healthcare for their medical condition or conditions due to lack of knowledge and or understanding. That is why I am sharing my story. If I can help just one person not feel alone in their journey, sharing my story was worth it. No matter how uncomfortable I may feel.
Currently, I have 4 doctors that are split in their final diagnosis for me. Two believe I could have MSA. The other two believe it’s FND. Both are in the Dysautonomia family. To find a movement disorder specialist in either of these diseases is pretty close to impossible. “Dysautonomia” needs to be known. These invisible illnesses should not go years without diagnosis. There are too many of us whose stories are way too similar. There are too many of us who are suffering without proper medical help for lack of knowledge. If I were to give any advice for those with Dysautonomia, I humbly advise to never give up and never give in. You know your body better than anyone, listen to it. Surround yourself with positive influences (that includes your doctors) and take it one day at a time (sometimes an hour at a time). To endure this illness takes remarkable strength.
Sincerely,
Dara from Pittsgrove, NJ
I understand. I have a similar disorder Autonomic failure but original diagnosis was dysautomia peripheral neuropathy. I know the doctors thought I was a hypochondriac. But when I was in the hospital with video camera monitoring me, they could see my heart rate of 38 and I fainted everytime I stood. It’s pretty hard to fake those things. I feel a great relief of just knowing a diagnosis.
Unfortunately a diagnosis for these “invisible illnesses “ is a long, tough battle. ( too long ) Everyday is a different one and only when you know what you’re battling, can you persevere.
Dara, your testimony is touching and hopefully helps others who are struggling with health problems that are elusive to most Healthcare professionals, who always want to call people crazy if they can not diagnose the condition..the main theme to follow is to keep seeking out specialists until you find answers..Bravo to you, my dear…its a very well written story.
I am so glad you did not give up fighting for the answers.
Your one of the strongest women I’ve ever had the privilege to have known. So proud your part of our family.
I am convinced I have mild dysautonomia. It moves around my body so I never know what I’m going to get. If I do too much activity I’ll get diarrhoea and epic pain to go with it. Sometimes, when I get out of bed my heart rate will go from 60 to 115 in about 30 seconds. It happens when I squat too often as well. Sometimes my heart races, and has a fluttery feeling or a big “bump“. Of course my heart hasn’t been kind enough to do that when I was wearing a monitor so it goes in the crazy patient category. My blood pressure can go from 110/74 days and then all of a sudden I am 160/110 for days on end. And the list goes on and on and on and on – and although I have seen a lot of specialist they all seem to be very focussed on trying to tell me why I’m not their problem. They all say somethings wrong, but then put more effort into explaining why it isn’t going to be them figuring it out.
I have cervical spinal stenosis, and I am nearly 1 year. Postoperative. And I’ve spent six months of the year trying to convince doctors I have dysautonomia. SMH I am so fed up with Western medicine. But Won’t let myself forget that I had access to a surgery that save my life, when there’s kids all over the world dying of diarrhea. All about perspective right? Thank you for sharing the letter to us. You’ve made a difference for me.