Lisa Marie Neely's Story

What were the steps leading up to your diagnosis?

The first symptom that I can remember having is numb hands. My trip to the neurologist left me with a diagnosis of carpal tunnel and a warning that if I didn’t have surgery, I would likely lose feeling altogether.

The numbness went away within a few days, so I went on my merry way, never giving it another thought and never returning to that doctor again.

Fast forward three years. I noticed that my feet were going numb. A week went by with no relief, so I went to my doctor. He referred me to a neurologist in Houston, who diagnosed me pretty quickly with something that I’d never heard of before, transverse myelitis.

However, when he received the results of my MRI, he wanted to do more tests. After several MRIs and two spinal taps (he missed with his first attempt, so he had to do it all over again) he called me at work to tell me that I had multiple sclerosis. He called me at work to tell me!

Who has been there for you? How?

My fiancé has been with me since before I was diagnosed and takes very good care of me. Support from others who live with MS helps because they understand what I’m going through.

What lifestyle changes have you needed to make?

I have had to leave my job after working there for 15 years.

I can no longer exercise or work in my yard or do any physical activity without a level of exhaustion that renders me useless. I have to stop and rest a while, 20 minutes or so before I am good to move around again.

Brain fog, severe fatigue, lack of focus, extreme sleep deprivation, weakness, balance issues, restless leg, bladder problems and depression are just somewhat has become my new reality.

I also have to catch myself every time I go to the restroom now because the MS has caused neurogenic bladder.

What accomplishment are you proud of?

I have become an MS Activist with the National Multiple Sclerosis Society which allows me to attend meetings at our state capital and speak with representatives about issues important to those living with MS.

I have also served on the Government Relations Committee for over two years and have volunteered for the National Multiple Sclerosis Society since the time of my diagnosis.

I have raised money by participating in the MS Walk and have been one of the top fundraisers in the Houston area for the past three years. With the help of the National MS Society, I plan to start an MS Support Group in my home very soon.

What advice would you give to someone living with MS?

Get connected with others who have been diagnosed with multiple sclerosis. Join organizations that focus on MS issues.

Speak with a counselor, psychologist, or psychiatrist who can help you deal with the flood of new feelings and emotions that come with an MS diagnosis.

Join a support group. Focus on helping others with their needs and feelings because it allows you to step away from your own worries and struggles for a while.

Is there anything else we should know?

I am willing to share anything or answer any questions, but nothing is coming to mind at the moment.