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Does MS Ever Get Better?

Multiple sclerosis is such a mysterious disease. There is still so much that just doesn’t make sense. Reports from recent MRI scans has got me thinking.

My first MS symptoms

I’ve been officially living with MS for over 14 years now; arguably up to 20 years if you consider my first BIG bout of optic neuritis as undiagnosed MS. Or even longer if we want to look back to the vision issues that sent me through an MRI machine for the first time in 1994 or the depression diagnosed in college that very well could have been my first MS symptom.

A lew lesion

It was September 2005 that a trip through the MRI machine showed that a couple of very small lesions in my neck had gotten bigger and added together with the one large lesion seen in July would finally give me the “multiple” part of multiple sclerosis necessary for an official diagnosis.

I couldn’t see for three months

Back in March 2000 when I was blind in one eye, no lesions were found on MRI. Inflammation was evident on the optic nerve with no lesions. But boy, did that inflammation cause a bunch of ruckus. I couldn’t see for three months. Years later, evidence of nerve damage could be detected through visual evoked potential tests, although lesions were absent.

Sometime a few years into my MS diagnosis, the individual lesions in my neck seemed to grow into each other and become one very large lesion that spanned across three vertebrae covering the territory of C4 through C6.

Re-reading my MRI reports

When I re-read MRI reports over the years, I can see how the MS lesions in my neck have changed. Now the report simply states that “There is a faint intramedullary lesion involving the midline anterior aspect of the cord at the C5 vertebral body level.” No mention of that same lesion wrapping around the cord and down to C6.

Looking to an alternative treatment, Rituxan

Significant healing began to occur after I started using Rituxan 10 years ago. For this, I am truly thankful. My body functions better and I feel better than I did 10-12 years ago. At that time, my MS was on a downward spiral. I knew I needed to do something about it which is why I looked to alternative treatments (off-label, non-approved treatments) to stop my MS from getting worse.

I’m so glad that I spoke up and questioned my doctors back in 2009. Once we finally got into an every-6-month routine for Rituxan infusions, my MS began to get better. I got better. In fact, that last two relapses I’ve had are memorable since they occurred in November 2011 and February 2017.

2 relapses in 8 years

That’s it—two relapses in eight years. Amazing!!

So why the trip down memory lane?

Let’s go back to my recent MRI report. I was thinking about it and what struck me was that this time around the radiologist didn’t even mention that the lesion represented a persistent abnormality, T2/STIR hyperintensity, or evidence of demyelinating disease such as multiple sclerosis.

If I were to be going through the diagnosis process at this time with these MRI scans, I’d not likely get diagnosed with MS. I’d have to endure the evoked potential testing, lumbar puncture and spinal fluid analysis, and the wait-and-see-what-happens approach that I needed the first time around. But this time, I’m not sure that the evidence would earn me a concrete diagnosis.

MS doesn’t just go away

We know that MS doesn’t just go away. It rarely gets better, besides partial remissions after an exacerbation. But when MS does get better, we should celebrate that.

The confusing part is that I STILL experience several MS symptoms. It doesn’t matter what lesions I have or don’t have. Some of my MS issues have never fully gone away.

I still experience MS symptoms

The pinprick test still doesn’t make me flinch due to numbness of all four limbs. Heat sensitivity makes it hard to walk, talk, and think straight, particularly when trying to do all three at the same time. Fatigue is a pain in the butt. My face sometimes feels like an elephant is standing on it and other times it feels like feathers are tickling it. Spasticity makes the back of my legs hurt like heck, for which I have three different prescription medications on hand to help reduce that pain. If I have a UTI, I know it because I can’t feel the simple act of peeing; no typical pain, just pressure in the abdomen and a smidge of incontinence.

Taking advantage of my healing

Despite all of this residual MS stuff, I’ve managed to take advantage of the healing. Without it, I don’t think that my husband and I would be cycling as much as we do. This past summer we did something I had previously thought outlandish or impossible.

We rode more than 51 miles on the first day of BikeMS!!

I felt so proud of myself because just 5 years ago, I could only ride an indoor exercise bike for 5 minutes before my legs were toast.

Celebrating stable disease

MS is certainly a mystery and it is often not static. But I gotta say that stable disease is the best static outcome we can hope for. Improvement is just the chocolate buttercream icing on the vanilla bean cake.

Thanks for reading!

Lisa

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Comments

  • EmilyAnuhea
    2 weeks ago

    Lisa, I am incredibly inspired by your cycling! Would you mind talking about that more? I purchased a stationary bike but I am having difficulty biking for more than 10 minutes at a time. It leaves me so fatigued, I am useless the next day or two. I would love to hear how you managed in the beginning, and how long it took before the side effects of cycling didn’t dictate the rest of your life. Thank you!

  • Lisa Emrich moderator author
    2 weeks ago

    Hi EmilyAnuhea,

    Thanks so much! I should write about those early days on the exercise bike if I haven’t already. Here are some of the things that I tried to do at that time and keep in mind.

    In PT (years before this), I would ride the exercise bike for 2 minutes. That’s it. Then we’d stop, rest, and transition to something else. At home, I started with 2 minutes and this was plenty as it was both my feet and hands that were going. If I could go 2 minutes and still feel good, that was good. I increased by .5 minute increments per week (or so). Seriously, this was a slow buildup.

    Then I started counting revolutions. After I was able to cycle for 300 revolutions and still feel good, AND was doing that in 5 minutes or less, I started counting time again. I don’t recall how long it took me to feel comfortable and confident at 10 minutes on the exercise bike. Many, many months.

    At one year, I think that I had worked up to about 30 minutes and still felt good after riding. If at any time, I felt like I was doing too much, I backed off on time/session for an entire week.

    It was a very long build-up and I was trying to eat better thus lost weight at the same time. That helped me to feel better as well and made it easier.

    When I started riding outside on an actual bike and got used to it, I noticed that 30 minutes on the indoor exercise bike was actually a lot harder than 30 minutes cycling outside. You don’t get to coast on an indoor exercise bike.

    I think that the concept of working below your fatigue level is one of the most important things I learned in PT. We always stopped doing something well before I felt like I needed to stop. Learning that type of energy management and becoming in tune with your body is quite valuable.

    I hope that helps to answer your question. I wish you the best in your own riding endeavors. Stationary bikes look so docile and harmless. They can really be challenging sometimes.

    Best, Lisa

  • Junaej
    3 weeks ago

    I am hoping and praying it will for myself. I was diagnosed in 1997. I have been through more downs than ups in my life, and I just started believing the quote what doesn’t kill us only makes us stronger.

  • Lisa Emrich moderator author
    2 weeks ago

    Hi Junaej,

    Thank you for reading and for commenting. I like the idea of becoming stronger because of the challenges that MS may have placed in our paths. I hope that you are doing well.

    Best,
    Lisa

  • amypollock
    3 weeks ago

    Wow! I can’t wait until I get to the point where you are.. my story is very similar to yours but I also have had a stroke and central pain syndrome and literally 30 other dx that they always found a way to blame my symptoms on despite my mri saying I have MS and having a lesion on my brain so many different opinions some said I have it some said no way but at the end of the day I do have MS and I’ve gotten so bad I put a pain pump in to control my pain except it did the exact opposite. I had so many complications that it threw me into the next stage of my progression. It seems like the more hope I have the worse my symptoms get. I’m now stuck in this body that wasn’t this bad prior to the pain pump and I have no way out. I thought I was in my own personal torture movie before but now there’s a sequel and it’s far worse then the first. They say it was my last chance to get pain control but that scares me even more. I’m 37 and I’m just tired of fighting but it’s nice to know someone is getting help out there

  • Lisa Emrich moderator author
    3 weeks ago

    amypollock,

    Wow, I’m so sorry that the pain pump did the exact opposite of what was intended. The complications sound horrible. I truly hope that an effective solution can be found for you so that your body can get back to healing and you can get back to enjoying your life. I’m very fortunate and I know that.

    Thank you for sharing and for being part of our community. Your words have offered me support this morning. I hope that we, as a community, can do the same for you.

    Best, Lisa

  • SueK
    3 weeks ago

    Congratulations Lisa! I hope your improved health continues. I have had MS for 18 years with 20 before that not diagnosed. It took losing feeling in the entire left side of my body to get doctors to pay attention. Until then it was mostly them rolling their eyes, secretly thinking I was nuts with all my strange symptoms.

    Today, I have completed treatment with Lemtrada. It wasn’t a walk in the park, but I also slowly noticed my symptoms lightening up or ceasing. No new lesions in 8 years, no changes in my MRIs! I call that success. But I still live with what became my new baseline. Like you said, MS doesn’t go away, but with the right treatment it just might just give you a break that’s easier to live with. Meanwhile, keep up the cycling! You are an inspiration!

  • Lisa Emrich moderator author
    3 weeks ago

    Hi SueK,

    I’m so glad to hear that Lemtrada has worked well for you. It seems our bodies really do want to be better when given the chance. Thank you for the encouraging words about the cycling. Now I’ve got to find a way to face riding in the COLD a bit to keep moving in the right direction. Maybe next summer, I’ll aim for a metric century. That’s only another 11-12 miles. 🙂

    Best, Lisa

  • Janus Galante moderator
    3 weeks ago

    Lisa,
    thank you once again for an enlightening story. I was not aware of the evoked potential tests, much less that there was a visual one. Clicking on the link to read about it was extremely interesting.
    I’m so happy that with the help of the Rituxan, you are now doing so well!
    Congratulations on cycling 51 miles! That’s awesome!

  • Lisa Emrich moderator author
    3 weeks ago

    Thanks, Janus! I’m definitely fortunate to be doing so well. And 51 miles was a shocker but made me feel tremendously strong and proud. 🙂

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