A Mom with MS: Keep on Moving

Closeup of young girl kissing her mom at the beachFour years ago, I was at the top of my game.  I was participating in Ironman Triathlon events, getting my master’s degree, and trying to be the best, most organized, never missing a beat, mom and wife possible.  Then, in no time flat, I went from ironman triathlete to woman in a wheelchair.

I was tired.  I chalked it up to being a busy mom.  All moms are tired, right?  I truly thought that I had worn myself out after years of endurance exercise and nonstop energy.  My legs and mind were exhausted.  Thinking back, it was like that scene in Forrest Gump when he ran and ran, and then just stopped one day.  I often say that my body decided, “I’m pretty tired…I think I’ll go home now.”

I began to lose my balance just doing normal things like emptying the dishwasher or walking up the stairs.  My legs felt like I was walking in water, heavy, painful, tired.  I often had trouble finding the right words to say.  I tried ignoring it, until my kids, ages 8 and 9, questioned me about why I was not answering them as fast as I used to.  Then I started to worry.  If they noticed, there must be something going on.

I set out to find the answer.  No training or triathlon that I had done in the past would prepare me for the energy that it would take to find the right care.

During my excursion to find out what was happening, I heard many things from different doctors.  My family often repeats the not-so- compassionate lines:  “Well, if you were a famous Hollywood actress, or the President’s wife, I would send you to the hospital to run all sorts of tests.”  (Well, knowing that Michelle Obama and I won’t be trading husbands any time soon, I may be in big trouble here!)  When I complained about having trouble with my memory and feeling “out of it”, I heard:  “What do you think that you have:  dementia?”  And “You have eczema, there’s your autoimmune disease.”  As if I was asking for one.

It has been quite the ride, definitely worse than being on the bike for a hundred miles…and that’s saying a lot for me.

One dreadful Monday morning, my body – the one that I depend on for not just everyday tasks but to work as a massage therapist and fitness trainer – gave out on me.  My left side did not function.

A trip to the hospital led to four days of poking, prodding and tests.  A lesion was found on the right frontal lobe of my brain and I had low B12, but there was no exact diagnosis.  My son was in the 5th grade musical and I needed to leave.  Not even the nausea and vomiting from the unrepaired lumbar puncture or the fact that I couldn’t walk were going to hold me back.  I was still a mom and I did not miss my kids’ events!

I followed up with the neurologist that I met in the hospital.   You would have thought I was asking for an illegal drug as I struggled to continue to receive B12 injections.  The injectable B12 helped both the nausea and the world slipping out from underneath me.  He did put me on Topamax to help cover the possibility of complication migraine and Nortriptyline to help with neuropathic pain.  Grateful for what I could get, but upset at his need to blame the symptoms on some sort of mental trauma, was enough for me to want to find a new doctor that understood the real me, where I was before, and where I wanted to be again.

I asked for a physical therapy prescription to help with balance and coordination.  Whatever was happening to me was scary, but I craved to be active again – walk straight – and I needed an outlet for the emotions and frustration that ensued this huge physical change.

Gaining strength, I traveled to the Cleveland Clinic’s Mellen Center where I was told that I had experienced the first episode of MS, or CIS (clinically isolated syndrome).  Ok, finally a name to this nonsense, but no meds to help (one lesion is not enough to warrant a definitive diagnosis of MS) and no cure.  The next neurologist that I chose in my hometown to help monitor my brain with MRIs spent lots of time trying to refute what the doctor in Cleveland had given and often just stared at me in silence.

Regardless of what doctors wanted to see, I identified myself as strong, both physically and mentally.    With a change in diet (major reduction of processed foods and sugar), a physical goal, and a promise to myself to stop knit-picking at the symptoms, I continue to increase strength and coordination on my left side.  It is important for me to have some sort of control over this and my body and mind are healing because of it.

Every once in a while a setback occurs, but without producing another lesion.  I have to remember that sometimes trying to go for the gusto that I once had may not be the best for my body.  I had a new normal now.  It is just a glitch in the neurological system.

My continued search for the doctors that understand me, paid off.  I found a brilliant osteopath that actually found out why I cannot absorb B12 and prescribed the injections for me.  While having symptoms at her office, my enthusiastic orthopedic doctor sent a text to my newest neurologist that practices medicine with compassion and care…yay!

 

About the Author

Robin Warnken, LMT, MS-Exercise Science & Health Promotion, is lucky to be the wife and mother of the sweetest, most active husband, teenagers, and boxers.  She loves to spread knowledge of the body to her clients and often reminds them of what her grandmother said to her in 2009:  “Treat your body like a temple, not an arena.”

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

Comments

  1. Robin,
    Thank you for sharing your story…why is it that the go to response is “mental trama”… I love your grandmother ” treat your body like a temple, not an arena” That is gold… a moving quote…
    Best to you,
    Kathryn, the Pilgrimage Gal

  2. Thanks for sharing your story, Robin! Love your determination and perseverance.

  3. Robin Warnken says:

    Thank you Kathryn-my gram was classic! I think that so many women get to tango with the misconception that there is a psychological problem rather than a medical one during the hunt for a difficult medical diagnosis. I became angry and then told a couple neurologists that I was now depressed for a couple of reasons, I wasn’t before this happened, but, yes, I cannot move right, I’m in pain, you are considering that I’m somewhat mentally unstable….and I may be believing you now!
    And thank you Gretchen-Who connected me to this website & its helpful content!

    I wanted to give thanks to my stepdad, who happens to be the best podiatrist in the universe, he has been the driving force behind me from the very beginning. He knew something was wrong, he has provided me with such unimaginable support (answers as many questions as possible and listens to me cry) while remaining compassionate and professional.

  4. Katie Cleary says:

    Robin, I love your story and your determination. We’ve all been there with the lame doctors and I’m so glad you wrote about it – and stuck it out until you found the right health team behind you – it’s something we all have to remember: we are not crazy and the symptoms are real – why do doctors think we would we be making these things up?

    I’m so glad Gretchen brought us together and that your wisdom is here for others!

  5. This amazing woman is my sister. She is the strongest, most determined woman I know. She has been so tough and stayed as positive as possible through all the years of getting the “run around.” I look up to her and admire her strength!! I love you Robin!!! Keep on keepin on!!! Xoxo

  6. I concur, Amy! She is awesome! I’m lucky to have Robin as my Pilates instructor. Her fortitude, breadth of knowledge, and her overall kindness inspire me all through the week after our Monday class. :)

  7. Hi! Thanks for sharing your story. Have you ever researched the paleo autoimmune diet? I’ve read about others who have had MS and have gone into remission by following it. It might be something to look into. :)

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