MS Relapses: An Evolution of Perspective

Posted on September 27, 2021 by MSAA

By Stacie Prada

Multiple sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.

Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse. Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure.

Year 5 – Monitoring MS Symptoms and Trying to Avoid Relapses
I started blogging, and my lessons learned became more accessible for me to find later. This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires.

Year 6 – I Feel Like a Rock Star!
I was declared “stable and in remission.” I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity.

Year 8 – When is it an MS Exacerbation?
I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.

Year 10 – Relapse Management
People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.

Year 13, Present Day – Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success. I envy my naiveté thinking that without relapses I’d be safe from disease progression.

The truth is nerves with old lesions can function for a while and give out much later. Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion.

The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary-Progressive MS in ten years is based on a time when disease modifying medications didn’t exist. Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough. There are no guarantees, nor are there inevitable outcomes.

With or without relapses, MS is with me and will shape my future. What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way. Take very good care, all.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

What is this?

Posted on September 22, 2021 by MSAA

By Doug Ankerman

Several months after I was bestowed with my MS diagnosis, I hit a rough patch.

My legs were weak and wobbly. My balance off-kilter. But the worst, was my vision.

My focus would go in and out. While bright lights turned me into a shriveling shrew.

Oncoming car headlights forced me to wear sunglasses at night. Not in tribute to 80’s pop-star Corey Hart, but because the glare was blinding.

(Yeah, I continued to drive because I was young, dumb, and bull-headed.)

What was I experiencing? A relapse? A flare? An exacerbation? Frankly I didn’t care what it was called—all I knew was that I was terrified.

My mind spun wildly. Was my condition here to stay? Was this my new life? Did Corey Hart have MS, too?

Lucky for me a three-day bender of IV steroids (and with it, the taste of sucking on an iron popsicle) helped put things back to normal. Well, as normal as MS could be.

Time passed. Relapse-free. But multiple sclerosis continued a slow, gradual nip and tuck at my faculties till doctors gave me the title of being “secondary-progressive.”

Which was fine. Whatever. It was just name to me. Some may think my outlook is trite but I believe when one has MS, you toughen up. You learn to deal with every situation. And take nothing for granted. You appreciate small victories. Cherish every moment. Live each day like crazy. Because when you have MS, you know how quickly things can change.

If you think you are experiencing a MS relapse, talk to your doctor first. But also remain calm. Breathe deep. And if you can avoid it, don’t wear sunglasses at night.

*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com.

Could This Be A Relapse?

Posted on September 13, 2021 by Angel Blair

On MSAA’s Helpline we often hear questions about MS relapses and what constitutes a relapse. Individuals ask whether the symptoms they are currently experiencing are just due to their MS or if an exacerbation of symptoms may be occurring. These are great questions that warrant valid and informative responses. The challenging piece of this, on the part of the healthcare professional at times, is helping to identify a true MS relapse from a pseudoexacerbation.

To be diagnosed with a true relapse, there must be certain factors at play. Individuals will either experience new symptoms or a worsening/recurrence of existing symptoms. These acute symptoms have to be present for at least 24-48 hours, without signs of other infections or fevers. This is where it can become tricky identifying a relapse from a pseudoexacerbation. Because with the latter, one can experience a temporary worsening of symptoms without inflammation or nerve damage occurring. A pseudo flare can result from illness/infection, fever, stress, heat sensitivity and other factors.

It’s important to discuss these differences with your healthcare team so that you can better communicate if you’re feeling any changes in your symptoms. Ask your doctor what signs you should look for if a relapse may be present, and when you should reach out to their office for assistance. Talk about ways a relapse could be treated and managed if it occurs. And make a plan for what you should do if you’re not able to get in touch with your doctor’s office. Some individuals will seek emergency medical services if needed when they’re experiencing worsening symptoms. So ask your doctor if/when you should seek care in this manner. Asking questions about MS relapses can be an integral part of your overall treatment plan and follow-up care.

I have MS – Can I Still Get a Flu Vaccine?

Posted on September 15, 2014 by MSAA

Colorful foliage, the scent of pumpkin spice, football games…Ah, there are so many things to love about the cooler weather! Unfortunately, the approaching flu season is not one of them. Around this time of year and throughout the fall and winter seasons, we often encounter individuals with multiple sclerosis who wonder if they can still protect themselves from the influenza virus by getting a vaccine.

In most cases, “yes,” although anyone considering a flu shot should check with his or her doctor in advance. Also, if you have MS, you should first consider the following points before getting a flu vaccine:

• Make sure you are getting the injected type of vaccine: Flu vaccines usually come in two forms – injected and intranasal. Because the intranasal variety contains a live rather than inactive virus, it is not recommended for people with MS. If considering a vaccine containing a live virus, please consult your doctor.

• Consider whether you are currently having a relapse: People experiencing an MS relapse are often advised to wait a period of time before receiving a vaccine. Talk to your doctor to find out if this waiting period applies to you.

• Talk to your physician first: Whether or not you are currently experiencing MS symptoms, it’s always important to consult with your physician before getting a vaccine. Discussing your plan with your doctor will ensure you are getting the right vaccination at the right time for you.

Want to learn more about MS and vaccinations? This information was adapted from MSAA’s July 2013 article, “Vaccine Safety and MS,” which was written by Susan Wells Courtney and reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer.

No one wants to miss out on the fun of fall and winter because of the flu. But having MS doesn’t mean you can’t help protect yourself against influenza. For more information on preventing the flu, you can also read, “Angel’s Tips for the MS Community on Getting Prepared for Winter.”

Why I Choose to Medicate for my Multiple Sclerosis

Posted on June 27, 2014 by Ashley

I know that there are a lot of people with Relapsing forms of MS who wonder why we are encouraged to medicate. Especially, when these medications do not ‘stop’ progression, but have only shown to slow progression. It’s a big decision to make when choosing to medicate, if you do plan to do so.

I can honestly say that looking at the ‘world of MS’ from 20 years ago to now, it seems that disability rates have improved, along with patients Quality of Life.

I know that a lot of the MS medications available have side effects that are associated with the treatment, but the way I look at it is, at least we have options. We aren’t without medications to help slow our progression anymore. We also don’t have to all take ONE certain medication either.

I haven’t been one of those patients with MS, who gets on and stays on the first medication that I chose. Not one medication works for everyone living with MS. I have changed medications multiple times since my diagnosis, not because I ‘wanted’ to, but because I needed to.

So, the question people ask me a lot is, “Why do you choose to medicate, if you have failed multiple treatment options?” This isn’t an easy question to answer by any means. For one, I’m scared. I’m scared of the unknown… I’m scared to know what would happen if I didn’t medicate. Even though these medications don’t promise to STOP progression, they have shown to slow it… and I really don’t want to know what my life would be like if these medications weren’t slowing at least some of my progression.

Another response I have is, why not? What do I have to lose? Before I actually got diagnosed I was miserable and could barely function, and ended up being in a wheelchair. (I am no longer in a wheelchair, by the way.) I’ve already been at my lowest and it’s not somewhere I want to go again.

Whenever you read anything about multiple sclerosis, it states that it is a progressive illness. I don’t want to take my chances to see just how ‘progressive’ my disease can be.

So, as long as there are options available for me try, I will. I know that having flu-like symptoms with an interferon, or GI issues with Tecfidera aren’t pleasant, but the truth is, it could be a lot worse if we don’t deal with those side effects and get on a treatment.

Now I’m not just saying I play ‘eenie-meenie-minie-mo’ to choose a medication – this takes a lot of research and discussing these options with my neurologist and family. Something I use when wanting to compare the medications is MSAA’s S.E.A.R.C.H. Program. There are many resources available to those with MS when trying to decide which medication to take, so make use of them.

The medications available to MS patients have been increasing since I was diagnosed in 2010. Try to stay informed and educate yourself about what’s going on with MS Clinical Research. This way you know if a new medication for MS is on the horizon.

MSAA even has a Research Update publication that you can check out to learn more. As most of you know, I’m a volunteer for MSWorld.org, and we attend Multiple Sclerosis Conferences, helping to keep everyone at home up-to-date on all things MS. You can view all of MSWorld’s Conference Coverage at the Conference Center or YouTube Channel.

Best Wishes!

Ashley Ringstaff – Volunteer for MSWorld.org

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