Community Views: Advice I Would Have Given Myself at Diagnosis

Advice for MS diagnosis

Multiple sclerosis (MS) often feels overwhelming at the time of diagnosis. Feeling powerless may be your first reaction. Yet, as you live with MS, you find strength and coping strategies.

Everyone needs tools for the journey. We recently asked the Facebook community, “If you could go back to the day of your diagnosis, what advice would you give your younger self?” We have compiled some of the shared wisdom below.

Get a second opinion

One important tip you shared was to see an MS specialist for your care. While your primary care physician (PCP) is a good starting resource, having someone who specializes in MS is vital. Specialists will be current on the latest research and are your best asset for managing the disease.1

“Get a second opinion with a doctor that specializes in MS right away.”

“I was referred and told it would be a 6-month wait by a doctor I respect. I turned out to be 9 months and worth the wait.”

Mental Health

Being diagnosed with MS can have a significant impact on your mental health. Having a chronic illness creates all sorts of turmoil as life and abilities change. Caring for your mental health at the outset of the disease helps you manage long-term.

“Depression has been harder for me than the MS! Get a good therapist and investigate the meds.”

“Mental health is just as important as physical!”

Treatment

The community also shared the importance of developing a treatment plan with your doctor from the start. Getting MS into remission and keeping it there involves making a plan and staying consistent with it.

“Get on treatment and STAY on treatment.”

“Start on relapsing-remitting drugs as soon as possible.”

“When you go into remission, be sure to keep taking your medication even if you feel fine.”

Move your body

Getting regular exercise helps manage MS symptoms. Gentle exercise can improve strength, mood, bowel and bladder function, and bone density.2 Many of you shared what a difference regular movement makes with this disease.

“Do the yoga, do it now and keep doing it.”

“Stay as active as you possibly can. Keep your muscles in shape.”

“Walk while you still can.”

Lifestyle changes

Living with MS involves adapting your lifestyle to accommodate the changes. Some of you prioritize your “bucket list” in the early years of having more stamina. You also learn to slow down and listen to your body to avoid exacerbations.

“Eat right. Stay hydrated. Stay away from stress.”

“Don’t try to get everything done before getting too fatigued.”

“Do whatever you dream of now because you might not be able to do so later on.”

“Be willing to adapt. Your future husband will NOT fold towels the way you do – and that’s okay, he’s trying to help.”

Keep living

One of the most crucial things you shared was focusing on enjoying life. Life does not end with an MS diagnosis. It will change, many days will be hard, and yet, as you reminded us, “Your disease doesn’t and never will define you!!”

“Stop worrying about what MIGHT happen and focus on the good in life.”

“Don’t assume you will follow the path of someone else; everyone is different.”

“It will be OK. OK may just look different, but it will still be OK.”

“You are still you and always will be. This is just a detour in your life’s journey. It is NOT the end of the road, but rather the beginning of a new one.”

References:

1. Cavallo M. Neurologists and Specialists of MS. MS Focus Magazine. Available at https://www.msfocusmagazine.org/Magazine/Magazine-Items/Posted/Neurologist-and-Specialists-of-MS. Accessed 5/25/2021.
2. Exercise. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Exercise. Accessed 5/25/2021.

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