Cog Fog and Other MS Symptoms You Can’t See

Photo by Stefano Pollio on Unsplash

YOU ARE A PROFESSIONAL MSer

When I introduced my goal of writing a second book about living with multiple sclerosis, I knew I couldn’t successfully do it on my own. I Have MS.What’s Your Super Power? (https://www.amazon.com/Have-Whats-Your-Super-Power/dp/1882658442) was a diagnosis reaction filled with newbie responses and thoughts.

Twenty years later, I can more adequately address the MonSter living within me. We’ve become forever friends, but need interaction with other MS professionals.

That’s you.

YOU, the MSer, are the professional.

I am not an investigative journalist, but that didn’t stop me from posting this request on social media.

I am currently writing my second common sense guide to live with the MonSter and would appreciate any suggestions for topics/questions/needs from the MS community. My first book reflected the reactions of a newly diagnosed individual. This current project is told by a 20+ year veteran. Thanks in advance.

RESPONSES:

Brain fog having the words on the tip of my tongue and then they fall off without me ever being able to save them and get to use them. Forgetting where I’m going while I’m halfway there. Losing the real me b/c I don’t feel like I can do anything anymore or do it as well as I used to, not that I was good at any one thing, but I could do it. — Donna Galloway, West Virginia MS Warrior

Please could you write about the hidden struggles which are rarely understood or recognized? Cognitive symptoms and fatigue can be crushing. Especially if starting a job or trying to manage day-to-day. There are daily struggles that have no physical symptoms. I find people understand these the least. Thanks, and good luck with the writing ✍️ — Clary

If you could write about how you explain in a quick way the invisible symptoms such as fatigue, brain fog, and memory problems would be amazing. I’d emphasize MS is different for everyone, symptoms can be very varied. Much appreciated. Enjoy the writing. — Monte

I echo that sharing any information about invisible symptoms and the social anxiety they can cause would be great. Emphasis to be placed too that it’s a condition with a nasty bag of tricks in terms of symptoms and every MSer’s experience will be different. — Spearsie

a guide to your rights to be free from discrimination and how it is normal to seem “normal” but feel far from it sometimes. _anonymous

This proves to me that MSers need more interaction with like-minded folks.

INVISIBLE SYMPTOMS

Many MS symptoms are invisible — from cognitive challenges to spasticity — making it difficult for others to understand your MS experience.

But, you don’t look sick: probably one of the most frequently used responses to multiple sclerosis. If there is no physical sign of our condition, it doesn’t exist. If that is so, where did this list come from?

Anxiety

Ataxia

Balance and walking

Bladder and bowel issues

Breathing problems

Depression

Dizziness and vertigo

Dysesthetic itching

Fatigue

Headaches

Heat sensitivity

MS Hug

Pain

Relapse recovery

Sensory symptoms

Sexual issues

Spasticity and spasms

Speech problems

Swallowing issues

Thinking and memory

Tremors

Visual disturbances and eye pain

Thinking and memory

The National MS Society published a brochure that reiterates the symptom list above.

Common “invisible” MS symptoms that are hard to see include fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, balance/coordination problems, and bladder or bowel problems

https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-But-You-Look-So-Good.pdf

SCREECH!

Do you mean more than one source recognizes invisible symptoms as valid?

I realize I’m preaching to the choir here, but the MonSter presents itself differently to all of us. We learn to deal on our terms. Sharing what we learn is invaluable to other MSers.

PLEASE SHARE

Can you add to the list of invisible/weird MS symptoms?

I’M NOT A DOCTOR

Although I consider myself an expert on my disease, it’s because I live it. No, I do not have a documented degree in neurology. Few of us do. But we know our bodies. We know how we feel even without a red X painted on our forehead.

In the words of country singer Toby Keith,

“I ain’t as good as I once was, But I’m as good once as I ever was.”

Hang in there, fellow Warriors.

Lisa, Lady With the Cane

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Lisaannettemccombs

Lisaannettemccombs

July 1, 2001, six months after the birth of my only child, I was diagnosed with multiple sclerosis.