Kathleen G. was diagnosed with MS in 2006 after a very long year of testing. Here, she answers some questions about getting the diagnosis and how her life has unfolded since.
Q: What led to your diagnosis?
Kathleen: I was finally referred to a neurologist by an ER physician after the heat got me one day, wiping me out, and sending shooting pains down my arms and legs.
The previous year I was bounced around from doctor to doctor who insisted I just concentrate on one symptom at a time! That was ridiculous. I was dizzy and they said I must have a middle ear infection. I had a gait disturbance, so they sent me to physical therapy. I finally saw a neurologist and, even though the ER referred me, he was in no hurry at all. I received one test a month over a one-year period. The last two were an MRI and a spinal tap. By then I was walking with a cane, barely, and had lost everything, literally.
Q: How has MS impacted your life?
Kathleen: My life ended while I was waiting to be diagnosed. My brain didn’t work right anymore and I couldn’t do my job. I couldn’t do any job because I didn’t know how I would feel from one day to the next. My kids were in high school, middle school, and elementary school. I couldn’t keep up with them. I was so emotional that they lost a lot of respect for me really fast.
Q: Have you made any conscious lifestyle changes due to MS? If so, have they affected your quality of life?
Kathleen: I went back to bare basics. Moved out of a big house that I couldn’t get around in to a tiny one-bedroom apartment with utilities included. Something finally clicked inside me. I focused less on stress and trying to do what I should be doing and instead be OK with doing what I could.
Q: What are your greatest fears about MS?
Kathleen: Simply, that it will get worse.
Q: What are your greatest joys with MS?
Kathleen: I was so happy to just know what the heck was wrong with me, I didn’t care what it was. At least I knew, and no one could say it was all in my head anymore!
Q: If your MS were an animal, what would it be and why?
Kathleen: A sloth—because that’s how I feel most of the time. And because MS is ugly and dirty with even more disgusting twists and turns the more you learn about it.
Q: Have your goals changed since you’ve been living with MS? If so, how?
Kathleen: My goals were erased and had to be completely rewritten. Anything I wanted to do that required me to be able to dash around—like working in a medical field, having a farm, taking vacations in remote places, camping, or successfully juggling work, school, and kids—were not options anymore. Maybe I could change my major in college and get into researching online. And if somehow I got enough money on disability to buy a horse, I could still have my own property somewhere. But my kids grew up without me; I lost my job before I knew what was wrong with me; and I have no energy left in me to travel to any remote places any more.
Q: What words of advice do you have for others in managing the future with MS?
Kathleen: If you want to plan for your future, be sure to write down your goals somewhere where you won’t lose them. And get in as good shape as possible now!
Q: If you had a motto for living with MS, what would it be?
Kathleen: Get real, lose any ego you may have, and don’t be so hard on yourself.
HealthCentral is pleased to share the stories of community members living with MS in our #RealMSProfiles series. If you are interested in sharing your story, please answer these questions.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.