When life gives you LEMS, make LEMonade!

ashley_gregory_LEMS warrior

Ashley Gregory's Story

Virginia Beach

Age: 25-36

A little bit about my journey:

My Diagnosis

Lambert Eaton Myasthenic Syndrome, Postural Orthostatic Tachycardia Syndrome, Hashimoto’s Thyroiditis, GERD, Undifferentiated connective tissue disease

Time to Get Diagnosed

1 year for my primary diagnosis of LEMS

Year I was Diagnosed

2016

Sending Love to

Dr. Kamal Chemali (neurologist) and Dr. Phillip Gentlesk (Cardiologist)

Hospital I'd Recommend

Sentara Norfolk General

This is my story:

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.

Let’s play 20 questions:

The song that keeps me going is:
Currently “Daisies” by Katy Perry although I am a huge Taylor Swift fan.
I never leave home without my:
Mask (for now!) and sunglasses
My go-to feel better movie is: 
“How to lose a guy in 10 Days” always keeps me laughing!
If I was in the hospital, the celebrity I would most love to visit me would be:
Taylor Swift!
When I need to relax, I:
Light my favorite candle and read a book or visit the beach
My favorite food is:
My Nana’s Veal Parmesan with fried squash, but I also love anything Italian and Pad Thai and Murgh Makhani
The quote that keeps me going is:
When life gives you LEMons, make LEMonade! Make the best of the situation given to you.
When I need a laugh, I:
Look at funny memes or call one of my best friends!
Meet my pets (or favorite stuffed animal):
Two Australian Shepherds named Ava and Jake
My hero is:
My mom
When I’m having a down day I binge watch:
Married at First Sight, Friends and Gilmore Girls
My favorite book to get lost in is:
Anything by Kristin Hannah or Kate Quinn. I LOVE historical fiction!
I want to be best friends with:
Taylor Swift (See a theme yet?)
The thing I’m most proud of:
Being able to serve as a patient advocate for rare disease patients and for continuing to honor my Mom’s memory working with Breast Oncology and Breast Reconstruction Surgeons!
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Learning to be more thankful for the friends who have stuck with me during my worst days
The most hilarious thing that has happened to me is:
Being clumsy in general and tripping over my own feet daily
It really means a lot when someone does this:
Shows you they care instead of telling you, although telling you is nice too!
My favorite social media account to follow is:
I don’t have a sole favorite. I love following other chronic disease patients who are surviving and thriving!
The advice I would give to myself back at the beginning of this journey would be:
Keep your head up! Also, remember the people that choose not to stick around aren’t people you want to keep around!
Words of encouragement that I’d give to my fellow warriors are
You are your best advocate! Always advocate for yourself! And “Courage is not having the strength to go on. It’s going on when you don’t have the strength” by Theodore Roosevelt
Follow my journey: My Instagram handle is Polopearlsandcurls. I also moderate forums on Lambert-Eaton News

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