Stories

From First Symptoms to Advocate for Transverse Myelitis

June 24, 2024

To recognize Transverse Myelitis Awareness Month in June, Global Genes reached out to The MOG Project, a global patient advocacy organization that supports those diagnosed with myelin oligodendrocyte antibody-associated disease (MOGAD) conditions. Transverse myelitis (TM) is the second most common presentation of MOGAD. Jim Broutman serves on the advisory board for The MOG Project, and shared his story with Global Genes:

In November 2016, I experienced a strange back pain and felt a strange achy feeling on both sides of my body which kept me in bed for 2 days.

By Day 3 I couldn’t urinate and went to the ER where they catheterized me and sent me home to schedule an appointment with a Urologist for the following day.

I woke up the next morning and tried to get out of bed only to fall…my legs completely went out on me.  I got up and fell again. Repeatedly.

I could feel my legs, but they weren’t working!

I was 54 years old.

I called my close friends, family and my husband who was coming home from work in a few hours to take me to the urologist and told them what was happening and no one including myself thought or mentioned maybe I should be calling 911.

I was absolutely not getting the severity of the situation.

I laid on the bed making calls and watching my Bravo shows patiently until my husband finally came home from work.

He came upstairs and saw I looked like a Raggedy Andy doll and immediately called 911. I was taken to the closest medical center where they proceeded to run several serious tests after it was determined I was paralyzed from the waist down.

I was so scared and my whole body was shaking uncontrollably when they took me in for MRI’s of the brain and spine and then I had the dreaded spinal tap which I didn’t even feel! As I was wheeled to my room I was handed a piece of paper and a doctor said to me “We think you have Transverse Myelitis (TM) and we see brain lesions so you may have Multiple Sclerosis (MS)”.

WHAT???

I vividly remember the doctor describing the long lesions found on my spine, which explained the back pains I was experiencing along with the temporary paralysis.

The doctor, my first experience with a neurologist, also explained that the transverse myelitis was likely an immune response to a recent cold I had and  he immediately prescribed the IV steroid Solumedrol, 1000 mg a day for 5 days which helped ease my back pain, and within 3 days I started to feel my legs again and was able to walk.

After a week in the medical center I was released, unable to urinate properly, and with two broken feet from all the attempts to stand while I was paralyzed and a multitude of other issues.

The next day, I saw a urologist because my bladder was dangerously full and becoming life threatening.  I was so determined not to be catheterized again that I willed myself to urinate within a few days and crossed bladder dysfunction off the list of side effects.

It was a very, very slow recovery and around 3 months after my TM episode I was starting to accept this new normal and seek some guidance and help.

My first move was to meet with one of the leading Transverse Myelitis specialists, Dr. Benjamin Greenberg, at UT Southwestern in Dallas, Texas.

He was intense and informed me that Transverse Myelitis can take up to 5 years to recover fully. I also learned about the difference between a partial and full recovery and that although I at that time I could walk, I still had issues such as severe neuropathy in my legs and feet and if they didn’t go away then it would be clinically considered a partial recovery.

He also suspected I may have MS and recommended a great neurologist locally for me who eventually, after an episode of Optic Neuritis a year to the day after my TM episode, first misdiagnosed me with MS and then thankfully soon after properly diagnosed me with Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), a rare disease which is a variant of MS.

I was scared and lost and not sure where to go or what to do.

I was so lucky to find a MOGAD support group on Facebook as it was so helpful and informative, and everyone was so supportive of each other!

After commenting on some posts, I was approached by a group of people who were running the Facebook support group and were starting a 5013c charity called The MOG Project. I was so honored to be asked to be a part of a project like this.

Shortly thereafter I made the decision to become a patient advocate for MOGAD and to help others who are trying to figure out this mystery disease.  I joined the Board of The MOG Project, and happily took on the most important role I’ve ever held as CMO (Chief Media Officer) where I could use my previous skills I learned professionally as a publicist to help raise awareness.

Little did I know how much my role at The MOG Project would change my life forever!  Not only have I met the most amazing group of selfless and brave patients, selfless caregivers and the most amazing doctors all over the globe thru The MOG Project but I now have a global connection and presence in the MOGAD community assisting fellow patients worldwide to adjust to their diagnosis, assisting pharmaceutical companies with their outreach and working with other MOGAD nonprofits in connection with The MOG Project.

I truly believe that all my prior work and life experience led me on this path to work alongside the doctors, scientists, researchers, and patients worldwide and to help anyone affected by MOGAD: the patients, families, friends, and caregivers.

It’s been 8 years since my Transverse Myelitis diagnosis and I am so blessed to be feeling healthy today and although I have a new normal, I am happy and grateful for everything I have learned and to everyone along the way that has supported me and lifted me up!

Visit The MOG Project

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