Reviewed by Neil Lava on December 27, 2017
Dr. Douglas Stuart, Neurologist; National Multiple Sclerosis Society: "What Is MS?"; Multiple Sclerosis Association of America: "Multiple Sclerosis Information for the Newly Diagnosed;" Shepherd Center: "Patient Programs."
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NARRATOR: A diagnosis of Multiple Sclerosis may be overwhelming to some patients and a relief to others, ending a long period of uncertainty. So, what is MS?
Dr. Douglas Stuart: Multiple sclerosis is a disease of the central nervous system. Meaning, it affects the brain and the spinal cord only.
It’s a disease of the immune system. So fundamentally, the immune system gets turned on to attack something called “myelin” which is an insulation covering within the brain and spinal cord.
And by doing that, there are patches of scarring and inflammation in the brain and cord that cause various symptoms depending on where the lesion settles.
Tiffany Curwen: I’d gone to the beach with my friends to hang out and have a good time, Upon returning home, I was so hot and I couldn’t get cool. So I decided to take a shower.
Well, I went in to the shower and half of my body was numb. I couldn’t feel it.
That persisted for about three or four days, and afterward, I went to the doctor and they admitted me immediately and said they were going to run some tests.
They did a test for Lyme disease and Lupus, and all kinds of other illnesses, and nothing came up.
The intern came in and asked me if I would mind if they’d run another test. And he sent me for an MRI.
At that point is where they found the lesions on my brain, discharged me, sent me to my primary care physician who read the report, and sent me to a neurologist to immediately have a spinal tap. And that’s when I found that I have multiple sclerosis.
NARRATOR: 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: Common symptoms of MS can be visual blurring, it can be fatigue, almost everybody has some element of fatigue with this disease.
It typically involves some sort of sensory distortion, numbness, tingling, burning, pins and needles. And then sometimes there is weakness, clumsiness, difficulty with balance.
Most patients with relapsing remitting MS will have an attack and then make a very good recovery, often complete recovery. And then the disease may go dormant for a number of months or even years without the patient having any further symptoms.
On the other hand, some patients will have additional attacks sometimes several per year. In which case, we definitely want to try to treat them more aggressively with more aggressive medication.
Richard Cordell: I was very active. I played tennis, I worked outside, I garden -- Susan and I garden and that was a big thing for us. There was not anything that we couldn’t do. There were no restrictions on our life and our physical mobility at that time.
I started having issues in my legs first ...
The disease would exacerbate and I would have to take things easy for a month. And then I kind of get back to my regular activities and routines.
Much more guarded though about what I can do and what I couldn’t do. You have to stay out of the heat. You’ve got to make changes in your life. The hardest part about the diagnosis of MS was I did not know what that meant for me.
Dr. Douglas Stuart: I recommend to all my newly diagnosed patients that they learn what the disease is. Start a process of self-education.
Establish a relationship with a very good neurologist who understands multiple sclerosis and has a number of MS patients and then start to learn about the medications that are available to treat the condition.
Richard Cordell: And I would advise anybody who even thought that their diagnosis might be MS or a physician has even mentioned that to them that they would research it completely.
And know a little bit about what is going on in development of new drugs and treatments and what it means to you, how it can work for you in your life.
There’s a high probability of new MS patients today leading a very normal life with some of the drugs and treatments that are available to them today.
Tiffany Curwen: I would suggest that you start with where your doctor starts you.
Don’t start with multiple sclerosis the broad picture, start with multiple sclerosis your picture, because that’s going to help you to navigate who you are in this disease, and what your situation might be a little bit more closely.
Dr. Douglas Stuart: So one of the things you need to know about multiple sclerosis is that no two patients are alike. Everybody has their own journey through this disease.
And so it’s hard to predict with any given patient, what their first year or their first five years or the duration of their disease is going to look like. And it’s particularly difficult to tell that at the very beginning.
Tiffany Curwen: I tried to talk to other people who had multiple sclerosis and found out that their journeys were so different from mine.
You want it to be something that you tackle bit by bit. You really do. You don’t want to leave yourself to chance with this disease because it is relentless and merciless.
And the only way to really sustain wellness for yourself mentally and physically is to take it bit by bit, day by day.
Richard Cordell: I can remember completely the day that I finally got my head around this.
When you finally do accept it here and it gets your mind pointed at another direction, then you can totally say, “I’ve got this, I’ve got to make some changes in my life, but I’m not going to lay down.”
Dr. Douglas Stuart: Multiple sclerosis is not going away. This is not a disease that comes and leaves. This is a disease that you will have for the rest of your life. And you have to make the best of it. Your glass can be half empty or it can be half full.
My patients do best when their glass is half full. If you have that attitude, then you’re going to tolerate some of the downsides of multiple sclerosis and you’re going to do better I think because of that positive energy and that positive attitude.