What’s It Like to Have MS? (One Woman’s Perspective on Multiple Sclerosis)

Because…

March is MS Awareness Month

I’ll share my personal experience with Multiple Sclerosis.

Questions I’m Frequently Asked

• When were you diagnosed with MS?
  • March 2018 at age 65.
• Isn’t that kind of late?
  • Yes, most people are diagnosed much earlier.
• Aren’t there different kinds of MS? What type do you have?
  • Yes, there are four kinds of Multiple Sclerosis. I have RRMS (Relapsing-Remitting MS). Our goal is to prevent this type of MS from becoming SPMS (Secondary Progressive MS).
• How long did it take you to get a diagnosis?
  • 13 months from my first appointment with a neurologist.
  • ~20 years from the onset of symptoms.
• Why did your diagnosis take so long?
  • When it was first mentioned as a possible though unlikely explanation for the symptoms I was experiencing in early 2017, I decided to get a second opinion. The second neurologist, after extensive testing, wisely referred me to a neurologist who specializes in MS. We then had to rule out all other possibilities—a best practice in this field–which took a full year.
  • As for the 15-20 year delay, that’s another story—one I want people to hear loud and clear. Until recently, I only knew one person with MS. My dear friend has a very rare and wicked form of this disease; I thought that was how MS showed up in everyone. My symptoms were nothing like Mickey’s so it didn’t occur to me to check in with a neurologist. People need to know that MS looks different in each and every one of us!
• How did you get MS? Is it hereditary?
  • I don’t know how or why I have MS. The prevailing theory is that MS stems from a combination of factors, including genetic, infectious, dietary, and environmental. I don’t know any ancestors who had MS or any family members who have MS now. I sometimes wonder if long-term exposure to mold in my work environments in Central Virginia has anything to do with my diagnosis. Maybe?
• What prompted you to see a neurologist two years ago?
  • I felt like I had an earthquake going on in my head. The tingling and ‘tectonic movement’ lasted for months. It wasn’t painful, but it was creepy. My calendar was chock full of medical, dental, and “alternative medicine” appointments to no avail.
• What are your symptoms now?
  • Many of us are reluctant to answer this question because (1) answering can do more harm than good–one can have MS without experiencing similar symptoms; and (2) do you really want to hear about bladder, bowel, and sexual dysfunction? Ha—I didn’t think so.
  • With that caveat, I’ll share some of my symptoms to give you an idea of one woman’s journey with Multiple Sclerosis, with RRMS in particular. Though currently in remission, I still experience:
    • FATIGUE! We’re not talking tired or sleepy or caffeine-deprived; we’re talkin’ monumental effort to get through the day. I sleep about 9 hours a night and rest often. That helps.
    • Physical Pain. Can occur anywhere. Most often I feel pain in my legs, especially at night, which makes sleeping difficult.
    • Balance Issues. Occasionally I feel like a life-size cardboard cutout; I topple over for no apparent reason. (Ask me about my broken rib. Usually I laugh it off when I fall, but not THAT time.)
    • Short-Term Memory Loss. I can meet someone today and forget meeting them tomorrow. I don’t mean forget their NAME (that’s a given, sadly). I mean forget their FACE! Definitely a challenge for an entrepreneur who networks to grow her business.
    • Confusion. It’s hard for me to stay focused and to make decisions quickly. I get “befuddled.” Ask my husband.
    • Itching. I take Gabapentin to help control the nighttime itch I get on the bottom of my right foot. It’s not a skin thing. It’s a nerve thing. Super annoying. (Gabapentin helps control the pain as well.)
    • That’s all I care to share publicly… You’re welcome to reach out to me if you have questions or concerns.
• How are you managing your “version” of this disease?
  • I get all-day Ocrevus infusions and steroids every six months.
  • I eat a healthy diet (most of the time).
  • I see my neurologist every quarter and undergo regular MRIs.
  • I sleep 8-10 hours a night.
  • I exercise several times a week (low-impact cardio/toning and gentle water aerobics).
  • I self-administer Functional Electrical Stimulation 4-5 times a week (during devotions).
  • I pour myself into encouraging others: my family, my friends, my clients and colleagues, and my fellow MS’ers.
  • I’m self-employed and work part-time, doing what I love to do.
  • I laugh. A lot. Thankfully, I have amusing friends, family, and pets (one dog and two guinea pigs).
• Are you concerned about the future? Is there a cure?
  • God has always equipped me to serve exactly the way I’m supposed to serve at any given time. I’m curious what the future holds, yes, but not worried.
  • No cure… yet.
• What advice do you have for someone who thinks he or she, or a loved one, has MS?
  • Keep a record of your symptoms and get a referral, if warranted, to a neurologist.
  • Get a second or third opinion if you’re not satisfied. Keep in mind that most diagnoses aren’t made until after numerous tests including bloodwork, MRIs, cognitive and optical tests, and a spinal tap.
• What advice do you have for someone who has been recently diagnosed and who feels alone on this journey?
  • Join a support group or two or three. Do not isolate yourself. Thankfully, Facebook has several groups to choose from if you wish to get support online. MS Frontiers is a fabulous group, administered by my friend and neighbor Dulci Repke Hill.
  • If you want prayer and encouragement, consider joining my new Facebook Group Christian Women with MS.
  • Check out my Pinterest Boards if you want a chuckle or a pick-me-up.
  • Stay involved with other activities as much as you can. (I repeat: don’t isolate yourself!)
  • Keep–or get–a sense of humor.
  • Join national groups such as the National Multiple Sclerosis Society.
  • Read joy-filled blogs like this one by my friend Traci Thau.
  • Pace yourself! You may not be the Energizer Bunny anymore, but you can still make a positive, meaningful contribution to the world.

If you wish, I’m happy to write more blog posts about my experience with MS. Hopefully, this post will be helpful to someone.

If you have friends or loved ones who have or might have MS, please share this post with them directly or by using the social media icons above. Thank you.

Onward and Upward!

Don’t worry about anything; pray about everything. With thankful hearts offer up your prayers and requests to God.

Philippians 4:6