Reviewed by Arefa Cassoobhoy on December 19, 2018
Douglas Stuart, MD, neurologist; Tiffany Curwen; Richard Cordell.
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NARRATOR: Multiple sclerosis can come with an array challenges through the years, but there are things you can do to help you on your journey.
There are four types of MS, the most common is relapsing-remitting, where a patient has clearly defined random attacks to their neurological function.
Attacks are completely unpredictable, as is the disease. With treatment, the possibility for recovery or remission from an attack is very good.
Dr. Douglas Stuart: The future for any given patient is unpredictable. For that reason, I like to tell my patients to try to stack the deck as much as possible in their favor. So there are things that a patient with multiple sclerosis can do to help improve their odds.
The most important of these is to be on the disease modifying medication. So, we know that untreated multiple sclerosis has a generally bad prognosis for causing long-term disability, disabilities with walking, with cognition, and the like.
So I recommend that everybody with MS consider treatment with one of the disease modifying therapies. These can be pills, these can be infusions, or they can be injections that you administer yourself.
Richard Cordell: If you take no treatment at all, you can’t think that you’re going to get better.
So, I think that probably the mental side of that medicine journey is doing the treatments, doing what you’re asked to do, trust in your physician.
Dr. Douglas Stuart: I recommend the patient stay healthy and wellness has become a very important part of managing MS patients long-term. So we recommend healthy diets, we recommend weight management. Obesity is a big problem in multiple sclerosis.
We recommend exercise. It’s clear in every study that’s been done on multiple sclerosis that exercise helps to improve prognosis, recovery, and the patient’s ability to tolerate relapses when they occur.
Tiffany Curwen: I do everything in moderation because I know too many fats or too many sugars, or too much of this or too much of that can adversely affect my treatments. I feel like I’ve been able to maintain a real quality of life,
and sustainability, and dance and jump around, and enjoy life because I’ve been able to -- I guess, mentally and physically master what MS’s effects are, and understand what I have to do to keep myself healthy.
Dr. Douglas Stuart: I recommend that patients have hobbies and that they have something that keeps them emotionally healthy.
It’s very easy with a chronic illness to become secluded and to become isolated from friends and from work and not to have the kind of full life that really keeps you healthy and well.
Richard Cordell: I think for me, it turned around a lot when I reengaged and sought out some other people to have friendships with that maybe were available during the day
or maybe retired or people I haven't talked to in a long time or finding a volunteer situation that would put you in touch with a lot of people.
Dr. Douglas Stuart: One of the problems with MS, especially early MS, is that patients can have a lot of symptoms but they don’t look sick.
So, my MS patients all the time will tell me, “I’m really not getting very much help at work or at home or really any empathy or sympathy because they tell me, I look so well.
How do I deal with that with my family and with my coworkers?” I think the answer to that it really is -- it’s education and communication.
I really encourage patients to have those kinds of open conversations certainty with your close friends and family and with coworkers that need to know.
Now, that doesn’t mean you need to share your most personal medical secrets with everybody. There are situations where you might want to be more discreet about your diagnosis.
Tiffany Curwen: I think with family and friends, the more they know, the better they’ll be. They’ll handle it their own way. They’ll take it however they need to, but they’ll be better off if they know from the beginning what’s going on with you.
For me, being a teacher, it was important to me that in my educational environment, I educated other people. I didn’t want to be the teacher that limps, the teacher that falls with nobody knowing the reason why.
Richard Cordell: When your family wants to support you and your friends, let them, let them help you. This is the hardest thing in the world to do.
I was quite independent and I did not want anybody to help me do anything but I finally had to throw that towel in, and my life became better after I did.
Dr. Douglas Stuart: My best patients are educated, they’re enthusiastic about taking this disease on and they have excellent attitudes, proactive, optimistic, excellent attitudes.
So I think the patients that work best with me are partners with me, realistic partners in the management of their disease.
So, I say realistic because I think we all need to realize that the therapies we have are not perfect. They’re going to have side effects and occasionally the disease may get the upper hand and that just means we need to try a different tact.
Tiffany Curwen: I talk to my doctor about everything that is happening with me. When we’re examining MRIs together, looking things over, he’s asking me questions, I’m asking him questions because I feel like we’re in this together.
Dr. Douglas Stuart: when I am speaking with patients who are newly diagnosed with MS, one of the things I want them to leave with is a feeling that this is not the end of the world, that this is a common diagnosis,
one of the most common diagnosis we see and that most of the patients we're treating are leading very happy, healthy and fulfilling lives.
That may be with medication, it may be without medication but, your physician and your treatment team is going to try to help find the recipe for you, that’s going to keep you balanced, healthy, working and happy and that’s all achievable.
Richard Cordell: You can make it good, you can make it bad. I think you have to keep the proper mental perspective on everything. So as this road turns as you go down it, you can’t be afraid of it. Think about it as a challenge.
Tiffany Curwen: And just know that you have multiple sclerosis, it does not have you.