Sharon Gregory

Diagnosis: Transverse Myelitis

Maryland, United States

My story starts over 6 years ago. I was a healthy 48-year-old female with a medical background. At the start of my illness, I was experiencing headaches, high/low blood pressure and body aches, and my doctor first thought this was related to perimenopause. After four months, I noticed high levels of fatigue combined with pain around the chest, which then moved primarily to the joint areas. My doctor Suzanne Gibbons and I had worked together in the past, so she found it strange with my frequent appointments. Upon the review of my chart she asked if I had ever been bitten by a tick. My response was “No,” then she asked, “Have you seen a bullet or circle area?” Again, the response was “no.” With my symptoms still not adding up, she decided to do a Lyme Disease Test. I laughed knowing it would be negative. When the results came in, I was surprised to hear a positive result. This was puzzling since I didn’t remember visiting any place where I could have been bitten. I was treated numerous times with the appropriate medication for Lyme Disease; things were looking up and I was feeling better.

Fast forward two years when, out of the blue, symptoms of a migraine and fever started. It seemed like the flu, so off to the ER I went. I was treated and then sent home. I’d been home for a few hours when around 2 am I had the urge to use the bathroom. Well, when I got out of bed my entire body went through tremors. I was unable to walk, and I had no movement on my entire right side. I thought I was having a stroke, so I went back to the ER. Doctors there went down the long list of testing: MRI, CAT scan, bloodwork etc. My symptoms were increasing – migraine, increased blood pressure, severe back pain in the spine that felt like someone lit a match and left it there to stay. I was on at least 7-8 medications including IV steroids. After a week of being hospitalized, scans, a spinal tap, inpatient/outpatient rehab, and being out of work for 3 months, that was it!! No answers of how or why this happened.

The next year would be filled with visits to specialists of all types. My doctor even sent me to a Parkinson’s specialist, who said she’s never seen anything like this in her 20+ years in medicine. I was still having ataxia in the lower extremities leaving me unable to drive or to walk without the assistance of a cane. My team of coworkers and family were my biggest supporters. My doctor’s last resort was having a consultation at Johns Hopkins’ Neurological Department. Finally, maybe I would get a long-awaited answer. I was assigned to the man I know was sent by God, Dr. Christopher Eckstein, a young resident. He examined me and with no hesitation told me “You have Transverse Myelitis, a condition which is associated with Lyme Disease if not detected in its early stages.” Finally, I could be treated without doctors thinking I’m CRAZY due to the test coming up normal. Six months after my diagnosis, Dr. Eckstein moved to his hometown to teach medical students about Lyme Disease and TM. I was sad but happy about his new venture because he could spread the word, since not many people have even heard of TM.

I had to start over with a new neurologist, but I still had my general doctor. Then, during one of my hospital stays, I met a neurologist, Dr. Kao. He was assigned to me after another neurologist told me “There is nothing I can do for you.” My body was getting immune to the steroids, which was our go-to for hospital stays. Well, Dr. Kao was awesome. He wasn’t a “by the book” kind of doctor. He tried methods others would never try. He suggested plasmapheresis, which is a washing of the toxins from your system, similar to dialysis. After, my first treatment, I was able to raise my leg off the bed and by day 3, I was walking with no assistance. I didn’t receive inpatient rehabilitation and was sent home with only 2-3 medications. I only needed to rest for 3-5 days, plus I could drive. Now, we do this treatment when numerous symptoms arise.

TM makes you advocate for yourself, research, and know your own body.  Here are a few of my tips:

  1. I log any symptoms over two days. This way you have information for your doctors and keep track of any patterns.
  2. Beware of viruses. Your immune system is very important, which means viruses can really set you back. Being in education, I had to move from the younger students to the older students to decrease my acute attacks.
  3. Please don’t ignore your symptoms!! The sooner you get treated, the sooner you can have some sense of normal life.
  4. Take any support offered. My family, friends and coworkers were my right hand even when I was too proud to take it.
  5. NEVER GIVE UP!!! We know our bodies best, and if that means 2-4 second opinions, then do it. You’re not going crazy!!!

TM is something many physicians have never heard of, so keep advocating until you get answers. I’ve learned so much through the Transverse Myelitis Association, from symposiums and podcasts, which offer great information. It’s very comforting when you hear you are not alone. Thank you, SRNA.

Sharon Gregory