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Patients with Multiple Sclerosis Share Their Experiences for the Newly Diagnosed Ones

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About 2.1 million people in the world suffer from MS or multiple sclerosis, says a rough estimate. This count does nothing to ease the anxiety that a newly diagnosed patient goes through. They have questions.

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. They fear being left alone or being seen differently or being treated like a challenged person.

Things change when the medical reports confirm multiple sclerosis for any person. In such times, support and clarity are the two things that anyone would crave.

The members of a community called ‘Living with Multiple Sclerosis’ were kind enough to share the anecdotes and the lessons they learnt through their journey with MS with everyone who may have recently received a positive diagnosis.

While it is a huge gesture of support from people who are practical strangers to anybody reading this, it is important to remember that one tip might or might not work for different people.

Bonnie Winkeler- Breathe and Keep Living

“Breathe. Take a long, deep breath. Despite having multiple sclerosis, you can still live a good life. Find a doctor that makes you comfortable. Make sure they have MS specialisations. Try and keep trying until you find one that feels right.

Don’t listen to the Internet. It might hint at a miracle cure, but there aren’t any. Discover the closest MS society and be a part of it. And always keep it in mind that every case of MS is different. A drug that did feats for someone else might do nothing for you.”

Dorothy Richards- Grasp Every Bit of Information That Comes Your Way, Have Faith

“I advise keeping a regular journal. Track the happenings. Note down every feeling that you can’t explain, every new symptom, and every question you have. Talk to your doctor and demand a reason for them.

Never feel sorry for yourself. Keep active, don’t miss meds, and try to stay positive. I was diagnosed with multiple sclerosis on April 1, 1991. I remember being shocked. But then, I found a doctor who helped me get through my condition. I am still here today! So hang in there.”

Christa Wells Bacak- Good Attitude Matters

“When your health is continuously declining, keeping a positive outlook and a confident attitude can be difficult. Try anyway. It will not help if you are always in a bad mood but a refreshed perspective can be very helpful.

Also, try to simplify life. Take as little stress as possible. Try to shave off responsibilities.”

Theresa S- Stay Alert

“Always keep your eyes open. Maintain a record of every symptom, no matter how small and insignificant it might seem. Track them with a calendar to know just how long you have experienced every symptom. Keep your doctors informed of the same.”

Rhonda Lowe- It Is a Day at a Time

“Being diagnosed with MS, grasping the idea that a few words on paper have knocked your life over, can be overwhelming. It is too much to take in, so go at it with a slow attitude. One day at once.

You will have bad days, which is okay. Read up on MS. Knowledge can save you from a lot of trouble. And when someone offers to help, accept the suggestion.”

Debbie Chapman- Always Listen to the Doctor

“Friends, family, neighbours, colleagues, everyone will have some advice for you. Something to eat, something to sniff, you get the idea. Smile, thank them, but don’t follow anything. Always consult your doctor.

You will need compassion and this need it will often bounce off the people around you. It will overwhelm you. It is why finding an MS group, online or offline is necessary. Sharing or just talking it out with people who are travelling on the same boat can be liberating in some senses. Stay connected with people who get you.”

Lori Wilson- Know MS inside Out

“Join the local support group. Educate yourself on multiple sclerosis. Attend every doctor’s appointments. Comply with all medicine related schedules. Request your close ones to read up on MS as well. And never refuse is someone volunteers to help you in any manner.”

Bobby Misenti- Find a Good Doctor

“If I were diagnosed today and not 24 years ago with MS, I don’t see much that I would have done differently. Except maybe benefiting from the vast information that researchers have revealed, that didn’t exist back in 1993.

I would suggest using certified sources like NMSS to learn about multiple sclerosis. Also, if you can find a neurologist with an MS specialisation, communicate with them.”

Tara Shider- Be Strong, Don't Let the Diagnosis Change You

“I was diagnosed in 2015. Until the diagnosis, I had no idea what multiple sclerosis was. I’d advise googling MS, talking to doctors, and attempting to know everything there is to know about the condition.

Stay ahead of your symptoms. Keep your doctor informed about every change. Take care of your body.

Try to remember- having MS should not change who you are, or keep you from trying to attain your dreams. Let your family and friends be around. They’ll stand guard at times when all you’ll want to do is give up.”

Irene Juppe- No Use Hiding or Wailing

“Don’t feel sorry. Don’t find a hiding spot. Don’t cry for yourself. Take command. Learn about MS. stay active and positive.”

Shamaniac Reverie- Learn about Your Triggers

“My biggest triggers are not eating, stress, heat, and sensory overload. Spot yours. Every time an episode happens, note down everything around it like the symptoms, whatever you were doing before the episode, etc. Spot your triggers.”

Mary Thompson- Diagnosed at 37, Thirty Years Ago

“I had three children at the time of my diagnosis. Optic neuritis was the beginning. I decided to take whatever control I had left with me. I informed my family and friends. They had no idea what MS meant for my life.

I had just started a microbrewery with my husband back then. So, it was kids, a new business, and other things to settle. I had no time to let the disease interfere.

I rushed to the National MS Society’s local office, got registered, and started volunteering. I learnt about multiple sclerosis. I talked to people who were going through it. I started feeling confident again.

Thirty years later, I am proud of my choices. I was on the MS Society board, the Master Brewer’s Association’s Board, and the local Arboretum board. I have been a phone volunteer. I have advocated cases with local politicians. I currently lead an MS support group.

All I would like to say is that you choose for yourself. Live your life. MS isn’t an excuse for anything. Think of what you would want to talk about with the newly diagnosed people thirty years from today. Be the person you just envisioned in your future.”

James Justice- Be Thankful for Multiple Sclerosis

“I had seizures, crippling migraines, at the time when I got diagnosed. I had eight episodes of seizures, and they were terrible and scary.

I would like to tell you to calm down, to take one day at a time. Find activities that appeal to your mind. Set goals for yourself. Work towards achieving them. Hard times are about to come, and they will be testing. Let your love shower over others. Be someone you would be proud of.

MS teaches you things, allows you to reflect on how you have been living, lets you understand and appreciate the little things. Rejoice in small achievements, like walking without assistance, remembering the date, or having a good day with no pain.

Thank your friends and family members. Tell them how much their love, understanding, and presence matters. Thank your doctors and the nurses too. With MS, you also get a different angle to view the world.”

Karen Starcher Mullins- Accept It and Move On

“It was 1976 when I got the news. It’s been 40 years. I just accepted my new normal. I did what I could, whenever it was possible. Try it. With the ‘it is what it is’ attitude, it gets bearable.”

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