FREQUENTLY ASKED QUESTIONS

QUESTIONS ANSWERED FROM MY PERSPECTIVE

**Who can get MS?**

Unfortunately for me, it’s mostly diagnosed in caucasian, females, aged 25-35, with a family history of auto-immune diseases. However, the disease does not discriminate agains gender, age, ethnicity, race, or geography. The ratio is estimated at 1 male to 3 or 4 females with MS. It is typically seen in individuals 25-55, but can be found across all age groups from child to elderly.
Worldwide, more than 2.3 million of 7.594 billion people have been diagnosed with MS. (0.03%)
In The United States, an estimated 1 million out of the 331 million people are living with a diagnosis of MS. (0.302%)
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**Unrelated, yet fun fact:** A person's chances of getting attacked by a shark is 1 in 11.5 million, (0.000009%)

**Most Common Symptoms?**

**Cognitive difficulties:** Memory loss, attention and concentration issues, difficulty processing information, trouble planning and prioritizing, and verbal fluency issues (like word recall).
**Vision problems:** potential blurred vision, loss of normal color vision, blindness in one eye, a dark spot in the field of vision, double vision, and uncontrolled eye movements or “jumping vision.”
**Fatigue:** Extreme exhaustion. It is the feeling that your legs can’t support you, and your muscle, bones, eyelids, and toenails HURT. Your bodies need for rest cannot be ignored.
**Heat sensitivity:** High temperatures make it harder than it already is for demyelinated nerve cells to conduct electrical signals. Many people with MS may experience a temporary worsening of MS symptoms when exposed to heat or dealing with a fever.
**Bowel and bladder problems:** Symptoms of bladder dysfunction may include incontinence; having to urinate frequently, urgently; and the inability to empty your bladder completely. Bowel problems may include constipation and diarrhea.
**Pain:** People with MS may feel things like sharp stabbing facial pain. Burning, aching, and tingling “pins and needles” are also common around the body. Chronic back and musculoskeletal pain may be experienced as a result of walking problems and/or muscle spasticity.
**Motor problems:** Stiff muscles and spasms, or sudden involuntary movements, also known as spasticity, are common. Trouble with walking is also common in people with MS.

**How do you get diagnosed?**

Everyones experience and diagnosis process is different.
Blood work. MRI’s of the brain, brainstem, and spinal cord are a must. A spinal tap is a likely expectation to validate the Oligoclonal bands in the spinal fluid. All of these building a baseline and a case for the assumed diagnosis.
The fastest way to get diagnosed is likely the most traumatizing. An emergency hospitalization due to a massive relapse with severe motor skill, visual, and/or functionality losses.

My Experience

**What does a future with MS look like?**

Time stands still. And yet it is a complete blur.
My future is full of possibilities and unknowns. Same as everyone else’s. Only difference is that I have a name to the monsters under my bed and the nightmares in my head.
I could argue that my future has a clearer and more realistic road ahead than those living in a bubble with an invisibility complex.

**How would you describe what you’re feeling? You look fine to me…**
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***Points to photo….***
- Every person with a chronic illness.

What’s the worst part of having MS?

Personally the worst part is the complete loss of control. The reality is that you will be reminded of your lack of control often and randomly. I am blessed to have caught it early. However, I still have to face the fact that on any given day I could lose an ability I took for granted, either temporarily or potentially indefinitely.

Running, Yoga Poses, Walking in darkness, Silence due to ringing in my ears.

Are you interested in supporting research by being in Clinical Trial?

I believe that clinical trials are crucial to the technological advancements, treatment evolution, and ultimate cure for MS. However, at this point in my MS Journey, I am not currently engaging in clinical trials.

I felt it was my first priority to ensure I was on an effective, proven drug to get myself into a stable and manageable place. Clinical trials are likely “double-blind”, meaning you don’t know if you’re getting the drug or placebo.

I couldn’t risk the blessing of an early diagnosis on the chance that I wouldn’t be setting myself up for a long, beautiful future. However, I do hope to be deeply involved in a cure.

Does anything make symptoms easier or worse to manager?

Keeping your stress levels down is mandatory. I’d suggest group or individual therapy sessions. You’ll need and want an arsenal of coping skills.

Extremes are a guaranteed instigation of a “flare-up”. Don’t get too hot. Don’t get too cold.

Over-exerting yourself isn’t a good idea either. You can trigger an episode by pushing yourself too far.

As a good rule of thumb, make the process smoother by not over-doing it and keeping the temperature as moderate as possible.

Do you want to participate in MS walks, and funding cures?

I’ll walk as much and as often as it takes to find a cure. I walk 5 miles per day already, so why not wear neon-orange and have matching t-shirts while I do it?!

Unfortunately my first Walk MS, 2020, was cancelled due to COVID-19 so the whole celebration and walk of champions / warriors wasn’t as inspirational and motivational as I had expected. But you better believe I will be there next year and many years to come!

More Great Illustrations of MS: https://positivewithms.com/an-illustrated-view-of-multiple-sclerosis/

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ASK ANOTHER QUESTION…

Charlotte Raejole

Email: MyMSedUpJourney@gmail.com

Home Base: Arlington, VA 22202

Instagram: My_MSed_Up_Journey

MS Awareness & Chronic Illness Disclaimer:

Each warriors journey and needs are uniquely unpredictable.

The content discussed and advised within this website is not intended to be a substitute for medical advice, diagnosis, or treatments. Please consult with your physician for specifics related to your personal process.

— Thank you

FREQUENTLY ASKED QUESTIONS

QUESTIONS ANSWERED FROM MY PERSPECTIVE

Who can get MS?

Most Common Symptoms?

How do you get diagnosed?

What does a future with MS look like?

How would you describe what you’re feeling? You look fine to me…

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Points to photo….