Ask the Expert – Numbness and MS

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Headshot of doctor Barry Hendin, chief medical officer for MSAA

Question: Does new or increased numbness indicate a worsening of MS, and is this symptom typically permanent, or can it subside on its own?

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Surprising Causes of My MS Flares

Learning how to live with MS takes time. Only through experience can someone learn which things in their environment trigger an MS flare. Many of these triggers can come as a total surprise.

To find out more about your experiences, we reached out on the MultipleSclerosis.net Facebook page and asked the community to fill in the blank: “I was surprised that ______ causes my multiple sclerosis to flare.”

More than 400 people responded. Here is what they shared.

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Community Views: Aging Fears with MS

Multiple sclerosis (MS) is a progressive disease. This means symptoms worsen as time goes on. Thinking about the future can cause anxiety. You worry about what happens in the future. 

We recently provided space for sharing those concerns on the MultipleSclerosis.net Facebook page. There, we asked community members to tell us: “What’s your biggest fear about aging with MS?” 

More than 600 responses revealed several common threads.

This is an illustration of a female figure thinking about aging and progression and anxiety

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Ask the Expert – Differences in the MS Experience

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: Why does each person with MS experience different symptoms?

Answer: It shouldn’t surprise us that everyone experiences their MS differently since we are all unique, but the individual factors producing that uniqueness are worth considering in some detail.

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Community Views: What Only We Know

Multiple sclerosis (MS) impacts the body in many ways. Is difficult for those on the outside to understand. There are certain things only other MS warriors fully comprehend. Connecting with others living with MS feels affirming. 

To learn more about these unique issues, we turned to the MultipleSclerosis.net Facebook page. We asked community members to complete this prompt: “Fill in the blank: _____ is something that only someone with MS would understand.” 

One of you captured it well: “When we say, ‘I don’t feel good,’ this has an entirely different meaning.”

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Community Views: An Accurate MS Commercial

Are they for real?! Most multiple sclerosis (MS) commercials feel completely disconnected from your experiences of living with the condition.

We wondered how you would improve them, so we turned to MultipleSclerosis.net and asked community members to get creative! We asked our community to fill in the blank: “If you directed a commercial about MS, it would include ___.” 

With more than 300 comments, they had some great ideas! 

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In My Opinion

By Doug Ankerman

It’s a well-known fact multiple sclerosis is different for each individual. What pains you might not bother me at all. MS symptoms can be as unique as one’s personality.

That’s why writing about the “ABC’s of MS” can be a real toss-up.

What “ABC” means to you could be totally different from what I believe.

Your “ABC” could mean “Always Buy Crisco.” Maybe it stands for “Absolute Best Cat.” Or, short for “A Bulky Corduroy.”

Only you know your particular definition.

In my experience, the “ABC’s of MS” stands for “Any Bathroom Close?”

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MS Highlights – Then and Now

By Debbie Petrina

When my own MS began in 1980, there were only two organizations in the U.S. that supported multiple sclerosis – NMSS and MSAA. Although information and programs were quite scant at the time, development and availability began accelerating during the 1980’s.

There were no personal computers/internet, cell phones, or social media. My first MS peer connection in 1984 was arranged confidentially between myself and another member of the NMSS as a courtesy. Soon after, a team of MS patients began confidential, telephone-peer-counselor training sponsored by the NMSS. I was one of them.

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Blame the Disease, Not the Person

By Stacie Prada

Question: What was most and least helpful when you were first diagnosed?

Answer: The people. Collectively, they were the most helpful. Individually, some were the most and some were the least helpful.

Blame the disease, not the person

The people who listened, asked questions and validated my feelings helped me the most with my multiple sclerosis diagnosis. Answering sincere questions helped me analyze what was true at that time and what was fear for the future. Thinking through the issues and explaining my experience helped separate what I could influence from what I couldn’t. They offered suggestions while respecting my opinions and decisions. The paid support people who helped me immensely included my medical support team: primary care provider, counselor, neurologist, and physical therapist. The unpaid support team included family, friends, coworkers, online connections, and the local MS self-help group.

Those who told me what I needed to do or why I shouldn’t worry were naïve and ill-informed. They would prescribe treatments without knowing what caused my symptoms or what my symptoms even were. They’d tell me I’d be fine since someone they know who has MS is fine. They assured me I’d stay healthy to appease their own fears, not mine. They included people in all of the categories listed above who helped me immensely. A person’s profession or relation doesn’t automatically place them in the category of helping or hindering. How they behave and interact does.

The people who judged me harshly for how my health was impacting them caused the most stress, guilt and pain. I was criticized for being less attentive in my relationships and for letting MS be my focus. I believed it was a personal fault that I was burdening others. 

I genuinely thought I should be able to deal with my health privately and keep doing everything I’d been doing for others. I wanted to be strong and prevent the people in my life from being affected by my diagnosis and documented chronic illness. 

MS symptoms and exacerbations made me unable to meet the expectations I had for myself and others had for me. It helped me realize the expectations had always been unreasonable. I learned I’d never be able to be healthy physically and emotionally if I kept trying to meet unreasonable expectations.

I realized I can’t do this alone, and I shouldn’t. 

The people who validated that I needed to address my health and accepted things would change – they helped me the most.

The people who were angry, hurt, blamed and resented me for their unhappiness – they helped force me to realize I didn’t need to keep working toward the life I’d been building, and I probably couldn’t if I kept trying. In a painful way, they helped me open my future to more possibilities. Changing things wasn’t failure, it was survival.

Survival requires self-care. To people who are used to benefiting from an unhealthy relationship dynamic, other people practicing self-care feels like neglect. It’s good that terms are available now to describe manipulative behaviors. Consider (and look them up if unfamiliar) gaslighting, shaming, isolating, catastrophizing, guilt-tripping, silent treatment, insults disguised as jokes, and jealousy are just some of them. Hopefully discussions and education on unhealthy relationship tactics help people recognize them instead of feeling responsible for other people’s feelings and accusations.

It helped the most when I and the people in my life accepted my health as a fact of my life and worked together to make the most of my abilities and limitations. They watch out for me, help me reflect, know my health may inconvenience them at times and always make it clear they are on my team. 

We are united in our approach: Blame the disease, not the person. 

*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/

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Funny, Not Funny

By Lauren Kovacs

OK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.

Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.

So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift. 

If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.

I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.

Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.

Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit.  Nothing big or painful yet. Getting ready to turn that around with humor.

Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.

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