My Lemtrada Journey: Do You Think You’re Walking Better?

My Lemtrada Journey: Do You Think You’re Walking Better?

MS_Wire_Ed_Tobias
“Do you think you’re walking better?”

The question came from my wife, Laura. It’s now about 4 1/2 months since my first round of Lemtrada infusions and I’ve had ups and downs physically. The day she asked, I was feeling pretty good. I also think I’ve been sharper mentally than in the past. Yet I wasn’t sure I’d noticed any improvement in my mobility.

“I don’t know,” I told her. “Maybe. It’s hard to tell.”

But she could tell. “Well, I think you’re walking better.”

Laura is a retired physical therapist, so she looks at my walking with a professional’s eye. My left foot drops and that leg drags. She thought the drop and drag were looking a bit better, and she told me to see if I could put my left heel down first when I walked.

I couldn’t do that but, in trying, I could see that my toes flexed upward, just a bit, rather than dragging. I could also lift my whole foot a fraction of an inch off the floor as I moved my left leg forward. So, yes, I seemed to be walking a bit better. Laura also noticed that I was standing straighter. Again, once she pointed it out, I could see she was right.

The next day I improved a bit more. Now, after getting rid of my usual morning stiffness, I find that, if I concentrate, I can lift my left foot high enough so that I can pretty much put my heel down first. And I’ve been able to do that for a couple of days now.

The last time I wrote about my Lemtrada journey was three months ago, and my roller coaster was spending more time in the dips than in the peaks. My fatigue was up and down. On several days it was tough to get out of bed. Other days I felt good when I woke up, but took a dive in mid-afternoon, and had to nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level.

Then I developed a fever and dry cough, which was diagnosed as a strep infection. It took an antibiotic, and about two weeks of rest, to regain my energy. Since then I’ve been on a plateau, not feeling bad, but not experiencing the walking improvement that some Lemmies report. Not until Laura’s six words the other day: “Do you think you’re walking better?” And, I do.

Of course, not everything has been perfect. I’ve written about a pain that I developed a few weeks ago in my hips and thighs, and it’s still with me. I’m about to see if physical therapy will help with it.

My first post-infusion MRI and an appointment with my neurologist are scheduled for mid-June. I can’t wait to see what the scan and her 25-foot walking test show. Stay tuned.

(You can follow my personal blog at: www.themswire.com)

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

4 comments

  1. XeniaE says:

    I was walking (and thinking) better just a few months after my first treatment, and am still going ok a year later. 🙂

  2. GARY SHAMBLEN says:

    Hello Ed, I’m not on Lemtrada yet. I don’t know if I will be, that depends on my Neuro, insurance, and me. I do appreciate your comments. I’m PPMS and I notice those little changes, mine being mostly negative for the last 35yrs. Your symptoms are very similar to mine except mine are on the right leg. I have pain in my hip, leg, and knee which is partially due to the ms weakening and my body compensating, and partially due to injuries. Physical Therapy, I now do mine in the pool, is very beneficial. I’ve done it for 17yrs. Provigil is great for my fatigue. An FES helps my foot drop, keeps me ambulatory and rebuilds leg muscle. Your comment of those noticeable changes that are so important to us brings hope that we can someday get back what’s been taken from us. Thank you for your story, Gary.

    • Ed Tobias says:

      Hi Gary,

      Thanks for taking the time to comment and I’m glad that you’re encouraged by what I’ve written. Yes, it seems as if we’re following similar paths. Who knows what the future will hold for any of us, but we all need to find encouragement where we can.

      I returned to PT, yesterday, for the first time in many years. I’ll be reporting on where that road takes me in a few weeks.

      Best of luck,

      Ed

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