Hi all! My name is Ashley Gregory. I am a 30 year old who lives in Virginia!
My mom passed away from breast cancer when I was 15 after a several year long battle. So I decided to dedicate my life to helping others and graduated nursing school in 2014. After that, I began working full time as a Registered Nurse in the operating room. I am lucky enough to still be able to work full time and I count my lucky stars for that!
I was diagnosed with Lambert-Eaton Myasthenic Syndrome in September of 2016. I had pneumonia in the fall of 2015 and everything went downhill after that.
After my treatment ended for pneumonia, I started having a lot of vague autoimmune symptoms. Suddenly, I had acid reflux all the time. I would drink water and have acid regurgitation If I laid down.
I was sent to a GI doctor who told me that I was “too stressed” and told me I needed to be treated for anxiety although I knew that wasn’t the case. At this appointment, my pulse was rather high and he pointed it out that I was in the 140s. I attributed it to being stuck in traffic before the appointment. I went to several other doctors and began to pay close attention to my pulse rate, which was always pretty high, and began to notice that I was trending in the 140’s resting. I then started having more autonomic related symptoms to include heat intolerance, near syncope, fatigue that preventing me from doing many of my daily activities, and went into SVT (Super Ventricular Tachycardia) several times before someone starting taking me seriously.
My “sentinel event” was luckily at work in April of 2016, I went into SVT taking a patient to our recovery room. I was sent to the emergency room for a full work up, at this point the ER doctor told me he was concerned I had something called “POTS,” after several tests were ran. I was discharged a day later and followed up with a cardiologist who confirmed that I did have “POTS” or Postural Orthostatic Tachycardia Syndrome. After a holter monitor test, I found out my pulse was going into the 200’s when working out or exerting myself. Luckily for me, a neurologist at the same hospital specialized in POTS and disorders of the autonomic nervous system (Dysautonomia) and I was sent to him to figure out my “Cause of POTS.” In September, after a tilt test, EMG, Small fiber nerve biopsy, glucose tolerance test, gastric emptying study, and 14 vials of blood were collected I was officially diagnosed with Small fiber neuropathy and Lambert-Eaton Myasthenic Syndrome. I quickly began treatment with IVIG in October of 2016, and have been lucky enough to return my almost baseline with a few adjustments and management with medications.
I consider myself truly lucky to have such a “short” diagnosis time frame because I worked in the hospital system with each and every doctor I saw, and I know many who have waited several years for a diagnosis, I know I am not the norm when it comes to diagnosing a truly rare disease.