Monday, October 10, 2016

Transverse Myelitis…My story

About a month ago I was a typical healthy mom and teacher.  We were just getting back into the swing of school.  Things were busy as they always are that time of year.  I had spent my summer working VERY hard to lose weight and I was feeling great.  I had a ton of energy at school and was enjoying having a nice new home to be taking care of.  I worked out every morning before school in my basement gym and was always running up and down my stairs doing house work.  Then one day it all changed…..

It all started with my left leg feeling a bit numb one morning.  I thought I just slept wrong but it never came back all day.  Monday I went to school and told our AD that my one leg was numb he recommended it see the trainer.  I thought it was silly but he offered to watch my class as I went to meet with him.  The trainer noticed that my right leg (that was not numb) was weaker.  He recommended I see a Dr.  I went back to my room and made a phone call to the local clinic.  They turned me down and said they were not accepting any new patients. So I called another clinic and they said they could see me the next morning.  Tuesday morning my left leg was still numb/tingling and I had a hard time moving my right leg but I was able to walk with a little assistance (wall, hand rail, holding a hand).  The Dr was unsure what was causing this but made me an appointment for a neurologist that Friday.  He did think that my weight loss may have triggered a vitamin deficiency so he ordered a bunch or blood work to be done for that and a multitude of other things.  They all came back negative I had no answers but every day I was waking up with less and less movement in the right leg.  By the time I went to the neurologist on Friday I was barely able to move my right leg at all.  She immediately sent me for my MRI’s.  I had a lesion on my spinal cord and I was diagnosed me with Transverse Myelitis.  They originally wanted to admit me to administer hard core steroids but luckily I was sent home with a home health nurse to put an IV in and Dan helped me administer the steroids with a infusion ball for 4 days (I was even able to go to work with the infusion ball).  Seriously it was the coolest thing ever.  I got worse before getting better….but I got better, which after reading up on my diagnosis I am VERY LUCKY!!!!!  I am not back to where I was but I have made major improvements.  I am now able to walk with almost no limp and I can also take stairs again but I have to go slow and be careful.  My knee still gives out on me occasionally, my strength is not back yet, I get fatigued very easily, and I also have random numbness throughout my body. I am doing physical therapy and still seeing improvements! I go back to December for more MRI's.
This little ball kept me out of the hospital
So what exactly is Transverse Myelitis???  Well I have done a lot of research after being diagnosed.  Transverse Myelitis is a rare autoimmune disease causing injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction.   Normally, the cells that are a part of the immune system have the ability to distinguish an infectious agent from a person’s body; however, sometimes some of these cells become ‘confused’ and mistakenly attack an organ within a person. This is known as autoimmunity and when the spinal cord is affected it is called Transverse Myelitis.  The signals are not able to be sent correctly and the person has numbness, weakness, and difficulty walking (or completely paralyzed).  1/3 of individuals recover with little or only minor symptoms, 1/3 are left with a moderate degree of permanent disability, and 1/3 have virtually no recovery and are left severely functionally disabled. Most show good to fair recovery!

Transverse Myelitis is very time sensitive!!!!!!  The faster you catch it the better chance you have for a full recovery.   Anyone who knows me knows that I never go to the Dr!!!  It still amazes me that I went when I did but if it were not for our school AD, Trainer, my coworkers, and my husband I probably would have put off seeking medical help.  This whole experience has been very humbling!!!!!  To not be able to physically do the things I was able to do the day prior has been a crazy experience.  I no longer take my basic health for granted and praise God for teaching me this lesson.  


  1. Praise God for his interventions through the right people! Hope you are continuing to improve!

  2. Oh my what a turn of events. I am glad you are progressing to get your movement back and be where you would like to be physically.

  3. I have been praying for complete recovery for you since this started Suzi! I love you so much and am so proud of you!

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