Diagnosing, Treating And Living With Multiple Sclerosis

MS. SUSAN PAGE

11:06:56
Thanks for joining us. I'm Susan Page of USA Today sitting in for Diane Rehm. She's on vacation. Until a few decades ago, there was little that could be done to treat multiple sclerosis. It's a disease that affects the central nervous system, and can lead to permanent disabilities. Today it's treatable, but there is still no cure. Joining me in the studio to talk about advances in diagnosis and treatment, Dr. Daniel Reich, of the National Institutes of Health, Dr. Ellen Mowry of Johns Hopkins University School of Medicine, and Dr. Timothy Coetzee of the -- Coetzee, I'm sorry, of the National Multiple Sclerosis Society. Welcome to "The Diane Rehm Show."

DR. DANIEL REICH

11:07:34
It's great to be here.

DR. ELLEN MOWRY

11:07:35
Thank you.

DR. TIMOTHY COETZEE

11:07:36
Nice to be with you.

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11:07:36
We're also joined from Greenlee, Colorado, by Dr. William Shaffer, a neurologist who specializes in MS and has the disease himself. Good morning, Dr. Shaffer.

DR. WILLIAM SHAFFER

11:07:45
Good morning. Thank you.

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11:07:47
We invite our listeners to join our conversation later in this hour. You can call us at 1-800-433-8850. That's our toll-free number. Send us an email at drshow@wamu.org, or find us on Facebook or Twitter. Well, Dr. Reich, describe for us what multiple sclerosis is.

REICH

11:08:07
Well, multiple sclerosis is a, as you said, a disease that affects the central nervous system, which means it affects the brain and the spinal cord. And because the brain and spinal cord control how we move and how we see and how we think, people with multiple sclerosis can have problems with doing those things.

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11:08:26
And Dr. Mowry, you see patients who come in for the first time at various stages of MS. What are the symptoms that people get that tend to bring them to your office?

MOWRY

11:08:36
The symptoms of folks with multiple sclerosis can be quite varied. Sometimes people have loss of vision in one eye. They might at other times notice double vision where they see two things instead of one. Sometimes they notice problems with sensation or moving in their legs, and other times they have more subtle symptoms like fatigue or depression. So the symptoms can be quite variable from one person to the next.

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11:08:59
And I understand why it would affect movement, what about vision. Why does it affect vision?

MOWRY

11:09:04
So the eye nerve, the optic nerve that leads from the eye to the brain can be affected by multiple sclerosis as well, and so in that case people often develop reduced vision in one eye, and then the way that the eyes move together can also be affected by damage to certain parts of the brain such that they can have double vision, or seeing two things instead of one.

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11:09:25
Well, Dr. Shaffer, you were diagnosed with MS while you were in medical school. What were the symptoms that made you go the doctor and figure out what was going on?

SHAFFER

11:09:34
It started out with burning in my feet, and I had been working out and I thought maybe I did something wrong and that's what caused that. But then it changed to a numbness up to my waist, and that's what ultimately brought me in to get evaluated.

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11:09:51
And how are you doing now?

SHAFFER

11:09:53
I'm doing quite well. I, you know, I'm lucky that I started on medication pretty quickly after I was diagnosed. And that doesn't mean that I don't suffer from fatigue, which is one of the most common symptoms, also some numbness in my hands and feet which have been there since 2002. Now, to me, that's normal.

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11:10:17
And Tim Coetzee, we've seen multiple sclerosis be in the news. Ann Romney has struggled with multiple sclerosis and has talked about that. Michelle Obama's father, her late father, also suffered from multiple sclerosis. We saw her talk about that in her speed to the Democratic National Convention just a couple weeks ago. What's the impact of having some very public figures talking about the disease?

COETZEE

11:10:42
Well, you know, it has actually a tremendous impact because it helps frame, you know, the discussion around what's changed around MS, you know, as Ellen and Danny and Will have talked about. MS is really changing, and we now can treat it, and we have a lot of different approaches that we can take to managing the disease, and having somebody like Ann Romney talk about both how it has affected her, but also which treatments she may use, and also alternative strategies that she's used to manage the disease, can really help us both talk about what it is as a disease, but also the fact that it is a treatable disease.

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11:11:23
Is that change, Dr. Mowry, that it's treatable, that you have some treatment options?

MOWRY

11:11:28
Absolutely. If we were talking in this studio 20 years ago, there would be clinical trials ongoing, but there wouldn't have been an approved treatment for MS at that time. Now, the number of treatments seems to be increasing year by year. So I think that it's a very hopeful time for people with multiple sclerosis.

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11:11:46
And if the treatments can cure the disease, what can they do?

MOWRY

11:11:49
Well, our goal is to stop the disease in its tracks. I like to think of the treatments as a pair of boxing gloves, and the person needs to put on a pair of gloves and fight the disease to push it back into the corner of the ring, and I tell people we're gonna try this pair of gloves. If it doesn't work, we're gonna switch you to another one, and just having that capacity to switch from one medication to the next is even a very new thing in the world of MS.

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11:12:13
Dr. Reich, we have a new drug that was just approved for MS, tell us about it. What do you think of it?

REICH

11:12:21
Well, it's a new drug. It's called Aubagio, and it was just approved last week by the FDA. And like the other drugs that we have, like the other medications, it acts by reducing the inflammation occurs inside the brain and spinal cord. It's a promising treatment. It's a new treatment, and as with all new treatments, I think we need to get some more experience using it, but that's going to happen now that it's been approved.

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11:12:52
What's the promising part? What is it about this drug that's different from the drugs that have come before?

REICH

11:12:56
Well, the -- one of the big new things for treatments in multiple sclerosis has been that until recently they were all given by injection, either into the veins or under the skin or into the muscles, and patients can do that themselves for many of the drugs. For -- a couple of the new medications have been given by mouth, and this is one of those, and so that has big implications for how people live day to day.

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11:13:24
So much easier, really, to take a pill then to get a shot. Well, Dr. Shaffer, what about -- there's another drug, BG12, that is seeking approval, could be approved by the FDA by the end of the year. What do you think of it?

SHAFFER

11:13:37
Again, like, you know, Dr. Reich said, until we have more time on the market, I am hesitant. I don't like taking shots, but that's what I'm, you know, on, and that's what works for me. So when somebody comes in and they're taking a shot and it is working for them, I tell them let's not move from that. Of course, nobody likes to take a shot, but if it's working, then I would recommend staying on it.

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11:14:04
And Tim Coetzee, how close do you feel that we are to a cure? Is progress being made in that direction?

COETZEE

11:14:12
You know, actually, progress is being made. I think part of it depends on how you define a cure. I think, you know, ultimately we'd like to get to a cause of this disease and, you know, is there a trigger somewhere out there that we can identify like a virus or something that starts the disease off. But, you know, if you're living with MS, you know, a cure could be stopping the disease in its tracks with a highly effective treatment. And so there, you know, what we're seeing is this new generation of treatments really is getting closer and closer to stopping the progression.

COETZEE

11:14:43
I like the boxing glove metaphor, really pushing it back into the corner. For people who are more advanced in the disease, their, you know, cure really could more can I get function back, can I restore function. And I think now we are starting to see the first generation of work to look at whether or not you can repair the nervous system in people who have the disease, and perhaps bring back some function either through a therapy, a treatment of some sort, or alternative things like exercise therapy, reflexology, and the like. That could really assist in a person improving their quality of life, which for some individuals could represent as close to a cure.

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11:15:22
Of course we hear a lot about that from Ann Romney who talks about how horseback riding has been important in her feeling better. She also has talked about reflexology. How promising are those kinds of activities do you think, Dr. Mowry, when it comes to someone who's suffering from MS?

MOWRY

11:15:38
Well, I think that a lot of those activities have not been studied well, or rigorously, to know for sure that they're impacting the course of the disease, but certainly when we look at what's actually meaningful, what are we looking for in our treatment approach, quality of life seems to be and is one of the most important things that we can think of. There have been several studies looking at the association of stress and outcomes in multiple sclerosis, and in fact, a recent study showed that stress reduction actually does decrease the activity of the disease.

MOWRY

11:16:08
I think more work is needed in that way as well, but certainly when we think about some of these activities and how they may impact a person and his or her daily stress, that there is good promise that they may be important for that individual.

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11:16:22
Well, Dr. Shaffer, what do we know about what causes MS, or what triggers it, what prompts someone to suddenly develop MS?

SHAFFER

11:16:28
It's still quite unclear, you know. There's not a complete genetic basis to it. There is a theory that a virus causes it. Epstein Barr virus has been, you know, long looked at as possibly causing it. I think what goes on is people with MS have an altered immune system, and they get exposed to any kind of insult and the body turns on itself, what's called an autoimmune disorder. When I got neurology conferences, I see so much about MS. It really is a great time for MS.

SHAFFER

11:17:05
So many neurologists are going into it and trying to study what causes it because it touches so many people. You usually meet somebody who knows somebody with MS, or knows somebody who knows somebody with MS. It's that common.

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11:17:18
Dr. Reich?

REICH

11:17:20
So I would echo that, and I would also say that one of the things that makes it difficult to find the cause, or one of the causes of MS is that we don't, in general, actually know when the disease starts. When people first come to the doctor with their first symptoms, if we do a scan of the brain, and MRI scan, we often see that the disease has actually been there for a while, and that's pretty interesting, but it means that we don't -- we aren't always able to see the patient when they're first getting the disease.

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11:17:52
Is there an age that you usually see it?

REICH

11:17:54
It typically begins in the 20s and 30s, at least for symptoms, but when the disease actually begins is actually a matter of -- it's an open question right now.

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11:18:04
And disproportionately women, not men.

REICH

11:18:06
Right.

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11:18:07
And why is that?

REICH

11:18:09
There are many theories for that as well. There may be differences in hormones that play a role. Women in general are affected by diseases of the immune system, autoimmune diseases more than men are, but that's also an area -- an open area.

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11:18:28
We're going to take a short break, and when we come back, we'll continue our conversation about new strategies for treating MS and living with MS. We're going to go to the phones and take some of your calls. Our phone lines are open. 1-800-433-8850, or send us an email to drshow@wamu.org. Stay with us.

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11:20:04
Welcome back. I'm Susan Page of USA Today, sitting in for Diane Rehm. And with me in the studio today to talk about multiple sclerosis and its future, treatment, living with MS is Dr. Timothy Coetzee, who's chief research officer at the National Multiple Sclerosis Society, and Dr. Ellen Mowry, assistant professor of neurology at Johns Hopkins University School of Medicine. She's a specialist in multiple sclerosis.

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11:20:28
We're also joined by Dr. Daniel Reich. He's a neuroradiologist at NIH's National Institute of Neurological Disorders and Stroke. And joining us by phone from Greeley, CO, Dr. William Shaffer, he's a neurologist at North Colorado Medical Center in Greeley, CO and he has multiple sclerosis himself and treats MS patients. Well, let's go to the phones and let some of our listeners join our conversation. We'll start with Hilda. She's calling us from Westland, MI. Hi, Hilda.

HILDA

11:20:57
Hello. I have a 44-year-old son who was diagnosed with MS when he was 39 years old. I guess my frustration is that I keep hearing about all the managements of the symptoms and all this optimism. My son has taken so many treatments, including many of the medications that are being touted. He has had stem cell treatment at the Cleveland Clinic during a trial. He has done alternative therapy. His condition continues to deteriorate.

HILDA

11:21:25
He's lost his job. His wife has left him. I am now his caretaker. I'm 71 years old and my husband and I have him in our home. He cannot walk. He has spasticity that is uncontrolled. And I guess my question and my concern is, you talk about management but nobody -- people see Ann Romney walking and Montel Williams. But people like my son are confined to their homes, have lost their lives basically, and I don't see answers.

HILDA

11:21:49
I don't see anything changing for these people. It's extremely frustrating. You know, the drugs -- MS does what it wants. It doesn't seem to be stopped or, you know, all this wonderful optimism, I don't see it. And that's basically my comment.

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11:22:02
Hilda, thanks so much for your call and we're so sorry to hear about your son. Let me ask the panel if they have some thoughts.

COETZEE

11:22:09
So, thank you, Hilda, for sharing that. I think, you know, on the -- you make a really -- you point out what's one of our big challenges. You know, MS is really variable. You see, you know, the experience of, say, an Ann Romney and you compare that to the experience of your son. And it just -- it's a disease that affects many people in different ways. I think, you know, on the issue of symptoms, that's one of the -- that is an emerging area for developing new treatments.

COETZEE

11:22:34
We know that people with MS need more than just the disease, modifying treatments that we're so optimistic about. That things like fatigue, pain, spasticity are all symptoms that are hard to manage and ones that we do need to focus on now that we have the ability to modify the disease. You know, I think one of the things I'd also suggest is that, you know, in the case of your son, there are programs available through the National MS Society as well others that can really provide support to you and your son as you work through these challenges. I'll also ask if the panel here has any questions.

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11:23:11
I wonder if there's any advice, Dr. Mowry, about what someone in Hilda's situation do. Her son has tried different therapies, they haven't worked. His condition continues to worsen. What can she do?

MOWRY

11:23:22
Well, I think Dr. Coetzee brings up a good point. There are medicines that can try to arrest the disease in its tracks. But we also have medications to help with individual symptoms that occur. And managing those symptoms can be quite challenging. It requires a good partnership with a doctor who's willing to see the patient over and over again until we sort of get it right.

MOWRY

11:23:48
And so, I would encourage Hilda, if possible, to find a doctor with whom she and her son make a good connection and to develop that partnership and to manage symptoms as aggressively as possible so that he get some quality of life back.

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11:24:02
Here's an emailer who writes "While I'm happy with any advance for MS sufferers, it's been discouraging to hear of each new breakthrough and realize that, once again, it is a treatment only for the relapsing, remitting form." Now, Dr. Reich, explain to us these different kinds of MS.

REICH

11:24:18
Okay, I'd be happy to do that. In most people, about 85 or 90 percent of people, the disease begins by a period called relapsing, remitting MS, where people have attacks which can interfere with how they see or move. And those generally get better. And in about half of people, eventually they stop getting better. And in fact, these problems continue to get worse over time. And we call that progressive MS.

REICH

11:24:49
And in about 10 or 15 percent of people, that starts from the very beginning, that the people continue to get more and more disabled over time. And it's really that progression that we are trying to stop or trying to prevent. But where -- we are not yet nearly as successful as we'd like to be. There's a great deal of research into strategies for slowing that progression, hopefully even to repair some of the neurological damage that occurs. But it's -- it remains the greatest challenge in this disease.

COETZEE

11:25:31
I think the emailer also points to a really important area. People do ask, we hear it all the time. You know, it's great that relapsing is getting treated but, you know, I live with progressive just like Hilda's son did. I think the good news is that all the progress we're making in developing treatments for relapsing, remitting MS, how we did clinical trials, how the FDA looks at them, is going to actually be able to translate into progressive MS pretty quickly.

COETZEE

11:25:56
The biology is going to be different, but we're going to be able to figure out which treatments work better faster and design the clinical trial so we're not casting about in the dark as much. So, I actually think that we have a lot of reason to be optimistic about treating progressive MS sooner rather than later.

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11:26:11
And, Dr. Shaffer, if you had a patient who had an experience similar to Hilda's son, what advice would you give them?

SHAFFER

11:26:18
It would be important to know what he has tried and what he'd failed. And also, when I talk to patients, I tell them that there's a category of disease modifying therapy, and that's to slow the disease. But then this great, big, wide world of symptomatic management and MS symptoms can hit you from head to toe. And there are various things to try for those issues too. So it's important to find, you know, get the whole story.

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11:26:46
And what...

SHAFFER

11:26:47
And I try a lot of different things.

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11:26:48
If there's someone who feels like they're not getting the whole story or they're not sure that they're really quite matched right with the doctor they have, which can be a hard question for a patient, especially a patient with a serious chronic ailment. What can they do to try to figure things out? What resources could they try to tap?

SHAFFER

11:27:05
Well, one of the things that when I see a patient and they say, whatever you say, doc. You're the boss. I tell them, no, you're the boss. I couldn't be here if you weren't here. I tell people to find a doctor that they can partner with and who's going to listen to them and help them in all these categories. So you might have to try to find different doctors and find the right fit. But it's so important.

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11:27:28
Dr. Reich, would you have any other thoughts on that, on what somebody could do if they just not entirely sure they're getting the right care?

REICH

11:27:37
I agree. I think that the fit with the doctor is always extremely important. I think there's a great deal of resources that are now available from organizations like the National Institutes of Health, from the National MS Society and from many other places where people can educate themselves and really try to help.

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11:28:05
We can't always answer every listener's question on the air. So our guest, Dr. William Shaffer, will be answering your question about diagnosing, treating and living with multiple sclerosis after the show. So if you'd like, send us your questions on Facebook, Twitter or our website, drshow.org. Well, let's go back to the phones and talk to Lisa. She's calling us from Cincinnati. Lisa, hi, thanks for joining us.

LISA

11:28:25
Hi. I am a big fan of "The Diane Rehm Show."

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11:28:29
Great. Thank you.

LISA

11:28:32
I'm calling because I've had MS for probably about 20 years. And I've gone through many of the standard medications, the exciting Avonex, that didn't work and I tried Copaxone and that didn't work. And then I tried Tysabri and it got pulled off the market a week after I started it because of the deaths that were occurring. And so I was feeling pretty desperate and I went on daclizumab, which is actually a drug that was being used for organ transplant patients to stop them from rejecting the new organ.

LISA

11:29:06
And it actually also work in MS by stopping those angry T cells from attacking my immune system. And in the seven years I've been on it, I've only had one flare and only one lesion in all that time. So that's my good news.

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11:29:26
Well, that's great. It sounds like you've really tried a lot. Now, what about experimental programs? If someone wants to be involved in an experimental program, experimental drug, what can they do, Dr. Reich?

REICH

11:29:38
Well, as Lisa points out, there are new experimental therapies that are being tried. We at the NIH investigate some of those, including daclizumab which Lisa is taking so successfully. But there are many experimental trials that are going on all around the country and that are appropriate for different sorts of patients that are targeting different aspects of the biology of the disease. And it's important particularly in people who are not responding to available therapies to have that discussion with their doctor.

REICH

11:30:23
Am I really -- am I maybe a candidate for an experimental therapy and which trials may be appropriate? Is there anything that actually help me and help us as a community advance the field forward so we can find new therapies?

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11:30:36
Dr. Coetzee?

COETZEE

11:30:37
Yeah. And I think one of the great things that a patient can do is they can go on the clinicaltrials.gov site and it has a searchable engine that allows somebody to look at all of the clinical trials that are going on in MS and also what location they're in and what they're looking for. So it's a free service that's available and one that I'd recommend that people look into.

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11:30:58
So, Dr. Mowry, who's most at risk for getting MS?

MOWRY

11:31:01
Well, the risk factors for MS are evolving. For example, we used to say that multiple sclerosis predominantly affected Caucasians. I think there have been recent studies suggesting that notion might need to be reexamined as increased incidents of MS has been demonstrated among military members, in African Americans, as well as in the pediatric population. So I think that risk factor, for example, is evolving.

MOWRY

11:31:29
We also know a little bit about other environmental factors that appear to be important for MS risk. So exposure to cigarette smoking, either firsthand or to parental smoking, low vitamin D levels appear to be associated with MS risk as well. And you heard earlier that Epstein Barr virus infection also seems to be important to MS risk. And we also know that there's a gradient of MS risk. It's not uniform.

MOWRY

11:31:55
So there are genetic modifiers of multiple sclerosis risk as well as geographic modifiers. I suspect that we are sort of at the tip of the iceberg, that there are many other risk factors that we haven't really identified yet.

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11:32:08
And so, is there anything that people can do to make it less likely that they'll get MS?

MOWRY

11:32:12
Well, certainly some of those risk factors we talked about are modifiable. One can modify ones vitamin D status by taking supplements or stop smoking. We don't know if modifying those particular risk factors actually does reduce risk, but it's certainly something that I think MS researchers and the National MS Society are interested in.

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11:32:35
I'm Susan Page, and you're listening to "The Diane Rehm Show." Let's go to Celeste, calling us from Indianapolis. Hi, Celeste.

CELESTE

11:32:43
Hi. Can you hear me?

PAGE

11:32:46
Yes, we can hear you. You're on the air.

CELESTE

11:32:49
Yes. I have MS. I was diagnosed in 1988. My brother has MS. He was diagnosed a few years before me. He is older. And my sister, my younger sister, has MS. She was diagnosed after me. It was kind of one, two, three. My brother is in a nursing home. I'm doing relatively well. My sister is not doing as well as I am. We've got three different presentations of the disease. I guess I'm interested in what, you know, what genetic components there might be, whether there have been studies with siblings and what we have to look forward to in terms of any breakthroughs that might be in the offing.

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11:33:48
Celeste, thanks so much for giving us a call and telling us your story. I wonder, is it rare to hear about a cluster of MS diagnoses in one family like we hear from Celeste?

COETZEE

11:33:57
No. And I think Celeste is pointing out some of the most interesting aspects of this disease. There is certainly a genetic predisposition to getting the disease. But it's not a -- it doesn't fully determine whether or not -- your genes don't fully determine whether or not you will get the disease. We know, for example, that two identical twins, if one has MS, the other one has only about a 30 percent chance of getting it.

COETZEE

11:34:27
So much more than you would expect, but not 100 percent. Siblings have about a 2 to 4 percent chance of having the disease if one of their siblings does. The families, like Celeste's, are -- it's unusual to have that many, but we certainly hear of that. And I think what she points out were the different people in the family have very, very different forms of the disease and are affected by it to a different degree is the typical story and quite -- and tells us that it's not just the genes that are going into this.

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11:35:07
And, Dr. Mowry, if someone in your family of sibling, say, has been diagnosed with MS, is there something you should do to have yourself tested or to take precautionary measures?

MOWRY

11:35:19
We don't typically recommend screening for multiple sclerosis among asymptomatic family members because we don't really know what the right thing to do is. Should we be treating people if they have spots on MRI scan that look like MS but have never had symptoms? There are some studies indicating that a person may go through life and at the end of life may be determined that they have spots of MS in their brain and they had symptoms.

MOWRY

11:35:44
So we don't typically recommend treatment. And thus, we don't tend to recommend screening at this time. With my patients, I do talk with them if they have children about speaking with their pediatrician about the vitamin D story. Should their child be taking vitamin D or not? And we don't know the answer to that. So, that has to be an individual decision.

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11:36:05
Dr. Reich?

REICH

11:36:06
So as Ellen said, we don't recommend screening, but this is an area of active research. And I'm participating in a study with colleagues at Harvard University where we're looking at people who may be at higher risk because of their family history. It's a study called Genes and Environment and Multiple Sclerosis. It has a Facebook page. And people who are related, first-degree related, so siblings or children or parents of people who have MS can actually enter this study.

REICH

11:36:37
And we hope that it will teach us a lot about what determines the risks and how we can potentially identify it before it occurs.

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11:36:46
So, is it that you think people can be genetically predisposed to getting MS, but there needs to be some kind of trigger that makes it a disease? Makes it a problem?

REICH

11:36:53
Absolutely. And probably more than one such trigger.

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11:36:56
And what do you think the triggers are? What are the big triggers that you're looking at?

REICH

11:37:00
Well, as Ellen mentioned, there may be, and Tim also mentioned, there are potentially viruses that may be the trigger. There are environmental factors, like exposure to sunlight and vitamin D levels and smoking. All of these things go into the mix together and probably the age at which you are exposed to these things makes a big difference as well.

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11:37:28
We're going to take a short break once again. And when we come back, we'll go back to the phones and take some of your calls and questions. We'll read your emails and we'll talk about the promise of stem cell research and how that might affect MS. Stay with us.

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11:40:05
We're getting a lot of emails with people curious about Vitamin D and MS and what other supplements might be recommended. Dr. Schaffer, I know that you're a big believer in the benefits of Vitamin B12. What do you tell your patients about that?

SHAFFER

11:40:19
With Vitamin B12 you can't have too much B12 as opposed to Vitamin D where you can get to toxic levels. I always check Vitamin B12 on people with MS and also people who come into my clinic with fatigue, memory problems and different things that you wouldn't expect in a young person. Now the normal range for Vitamin B12 at my lab is 210 to 2000. I consider anything less than 450 to be too low. I've have people come in after taking B12 and their level came up nicely and then they were told, oh you should stop your B12. Your level's too high.

SHAFFER

11:41:01
I tell them, you can keep taking B12 all day long if you want to 'cause you can't have too much B12 and it really can help with fatigue and just in general feeling better.

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11:41:12
And Dr. Mowry, you've been studying the link with Vitamin D levels. Do you recommend supplements on Vitamin D?

MOWRY

11:41:21
Right now we don't know if supplementation impacts the disease course. We've seen that people with MS who have lower levels of Vitamin D are at increased risk of having more attacks and more MS spots show up on the MRI scan. We're actually in the middle of conducting a study sponsored by the National MS Society to determine if in fact high dose Vitamin D supplementation does impact those outcomes. In the meantime I often do discuss with my patients and we do end up deciding to start Vitamin D supplementation while waiting for those confirmatory data.

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11:41:54
Well is this one of the things that people should be doing at no signs of MS but they should be watching their Vitamin D levels because it can be associated with diseases like this?

MOWRY

11:42:02
I think the jury's still out in that regard. There are many studies going on right now to determine what the optimal vitamin D levels are in the general population as well as whether supplementation and at what levels is safe as well as effective in preventing disease. And those are hard questions to answer.

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11:42:22
Here's an email from Robin who writes us from Bath, Mich. "I am a beekeeper. There's much conversation about bee venom therapy and people actually having bees sting friends or family members with MS." What do you think, Tim Coetzee?

COETZEE

11:42:36
You know, I think at this point there hasn't been any evidence to show that that changes the -- has an impact on the disease. And so it's an area that's been tried and so far hasn't shown any specific benefit. I think the question though about alternative strategies is an important one that a lot of people with MS take a look at and, you know, one that -- I know we are thinking about what are ways that we can explore research for alternative approaches to managing the disease.

PAGE

11:43:05
Well, and this would be managing the disease, not treating the disease, right, to living with the disease in a more successful way.

COETZEE

11:43:10
That’s right.

PAGE

11:43:10
'Cause we've gotten questions about Yoga and acupuncture. Those would be those kinds of treatments.

COETZEE

11:43:15
That's right. I mean, the alternative approaches to managing the disease, like Yoga, exercise therapy, even diet are all parts of the disease that we want -- we need to understand better and are really trying to explore.

PAGE

11:43:30
And here's an -- we've gotten several emailers asking about a diet, the work of Dr. Terry Walls and her findings of how diet and MS interact in her success and how changing her diet has improved her MS progression. Dr. Reich, what do you think about that, Dr. Walls' diet?

REICH

11:43:50
I think diet is another area where people are looking at possible ways of modifying the disease. Very specific diets have been tried I know of.

MOWRY

11:44:07
There have been a lot of diets that have been studied but the studies haven't really been conclusive to date. I tell my patients now that I think that there is a hope that we will find one optimal diet for people with MS but that right now the evidence isn't there. And so I don't typically recommend to my patients in the absence of evidence that they modify their diets, other than doing what they know they're supposed to be doing just in general for good health.

PAGE

11:44:33
It must be frustrating for patients though who are trying to find relief, either something to treat the disease or just to make it easier to live with, and finding all these recommendations for things and yet you're saying not really the scientific basis to really trust them.

REICH

11:44:47
That's a good point I think, you know, a lot of folks, you know, really hear -- you know, we have a ton of information. We all know what we live within this "information age." And so I think for many people with MS what we try to do is identify what's the best information that you can have out there. Always looking though that the individual -- you know, it's up to the person to decide what's best for them.

MOWRY

11:45:09
I would also comment that I think sometimes it's a relief for people to know they don't have to modify things that aren't supported by evidence. So people wonder, should I be doing this, should I be doing that, should I be taking all these other supplements. And I say, let's back off. Let's do what we know is effective and we know works and give yourself a little bit of a break. Go back to living the other aspects of your life that are meaningful and important to you.

PAGE

11:45:36
Let's talk to Debbie. She's been holding on. Debbie, thanks for being patient. She's calling us from Ellicott City, Md.

DEBBIE

11:45:41
Oh yes, hi. Thank you. I am an MS patient. I was diagnosed in 2001 and I'm getting so frustrated listening to all these doctors. First of all you should always have someone on your panel that's a non-drug person. Anyway, but I was encouraged to hear one of the doctors say that the thing to do is to look for the cause. I pursued the cause of my MS. I have never taken any of the drugs because I was not convinced that they would cure my disease without having more side effects than I could tolerate on a daily basis because I was a business owner.

DEBBIE

11:46:22
Anyways I looked at the cause and I discovered through my own research, thanks to no doctors who were no help at all to me, that the cause of my MS was damage to my immune system and the trigger was gluten. And it resulted in a malabsorption disorder that caused all my B12 levels to be down, my Vitamin D levels to be down. My symptoms with MS were horrible on a daily basis. The fatigue was horrible and I had pain. I had constant pain, which none of the doctors could explain.

DEBBIE

11:47:04
But with this cause, which the cause in my MS is celiac disease, which also explains why a lot of these autoimmune disorders are clustered in families, MS, Lupus, arthritis, a number of them. They're all autoimmune disorders. And a lot of them can be explained by celiac disease.

PAGE

11:47:29
You know, that's so interesting, Debbie. Let me ask our panel of doctors if they have seen this link between celiac disease and MS? Dr. Mowry?

MOWRY

11:47:38
Sure. I think that people who are at risk for multiple sclerosis are often at risk for other autoimmune diseases. And so it can be difficult to uncover one autoimmune disease when another one has already been diagnosed. When a person comes to the clinic for the first time and has symptoms or an MRI scan or an examination consistent with MS we certainly try to take a very careful history to determine if there could be another process going on. We always test people for a basic panel of potential mimics, we call them, of multiple sclerosis. And if there's a red flag of any sort we generally try to address that before starting an MS therapy.

PAGE

11:48:21
And what about Debbie's point that she has avoided taking any drugs. She's very concerned about the side effects. Are there a lot of patients in that situation?

REICH

11:48:31
You know, there are and individuals are concerned by some of the side effects with the treatments. You know, most of the time these treatment -- these side effects are manageable. But, you know, for some -- some individuals do choose not to pursue some of the disease modified treatments. And it's part of why we also need to continue sort of the investment and research to get to therapies that don't have any of these side effects.

PAGE

11:48:52
And what are the big side effects?

REICH

11:48:54
There's flu-like symptoms. I'll turn to some of the other doctors who actually see patients that suggest...

MOWRY

11:48:59
Well, until recently we -- with the injectable medications, there were two classes of medications. One class would cause flu-like symptoms, could also cause some toxicities in blood counts and liver, so those needed to be monitored. The medications can have injection site reactions, particularly those that aren't injected into the muscle.

MOWRY

11:49:21
Some of the newer medications have different side effects but they have potentially very risky, although rare effects such as bad infections or more serious damage to the liver, that sort of thing. And we're learning more and more about those as our experience with the medications increases.

PAGE

11:49:41
Dr. Shaffer, I know you're an advocate of starting treatment of some kind right away when someone's diagnosed, even if a patient says, I'm concerned about the side effects or says, I feel okay now. Why should I start therapy? Why do you hold that view?

SHAFFER

11:49:57
One of the things I tell people is not all the medications are going to cause the side effects that you've read about. And I will try medications and see how they tolerate them. There are also ways to mitigate the side effects as well. I have to tell them that even if you're feeling fine right now before starting a medication MS is always doing something. So it's best to get on something to try to keep MS at bay. I tell people, the medications don't necessarily at this point reverse the MS, so it's best to get on something sooner than later. And it's easier for them to believe in that and take something if they say, do you take something? I tell them I...

PAGE

11:50:37
And do you take something?

SHAFFER

11:50:40
Pardon.

PAGE

11:50:40
Yes, and so let me ask you, do you take something?

SHAFFER

11:50:43
I do. I have since 2002.

MOWRY

11:50:47
I would also add that there have been some studies showing that the number of attacks that occurs in the early disease course, the number of new spots that show up on the brain MRI may be most predictive of people who are at risk for some of the longer term disability with MS. So as Dr. Shaffer pointed out, people may be feeling fine or think, well I'll just wait and see what happens, but it may be that starting the medications early could have more of a benefit on the long terms problems with MS, even if at that time people aren't feeling so bad.

COETZEE

11:51:21
You know, I think the point I'd also make is that it's important, as we add all these new treatments, that individuals have the conversation with their physician because a physician really wants to help and is there to really treat the individual. And, you know, it can be some difficult choices and I think having a frank conversation with your physician to say, you know I really don't feel good and I don't want to take this. Are there alternatives or what are the consequences of my not, as Dr. Shaffer's pointed out, not taking the treatment? What's the long term impact of not starting a treatment, would be a really important conversation to have.

PAGE

11:51:57
We've gotten a lot of emails asking about a connection between MS and Lyme disease. Dr. Reich, is there one?

REICH

11:52:03
Not that we know of. These are two diseases that can affect the brain so they can in some cases 'cause similar symptoms. Lyme disease usually does not actually affect the brain. But they are, as far as we know, totally different diseases and would be treated in completely different ways.

PAGE

11:52:22
Let's talk for a minute about stem cell research. Is this something that could hold some hope for MS patients, Dr. Mowry?

MOWRY

11:52:29
I think so. The stem cell research is in its infancy but there have been a few small studies of stem cell transplantations, usually from one's own body, that have shown so far the therapy to be safe.

REICH

11:52:49
Yeah, there's actually a clinical trial in the Cleveland Clinic right now looking at stem cell treatments for progressive MS, which is really exciting and hopefully will show some results soon.

PAGE

11:52:58
I'm Susan Page and you're listening to "The Diane Rehm Show." We've been taking your calls, 1-800-433-8850. Let's go to Cherry. She's calling us from Grand Prairie, Texas. Cherry, hi, you're on the air.

CHERRY

11:53:08
Hello, how are you?

PAGE

11:53:09
Good.

CHERRY

11:53:10
I have just been literally diagnosed this week. I have been in and out of the hospital for the last three years due to my bladder shutting down, cannot urinate. It's like I'm drowning. I've sat in a bathtub to try to urinate, to pee. I've tried everything. So they go and they put a (word?) in. And I do have the lesions on my brain. Do you think the MS is causing my bladder to shut down?

PAGE

11:53:38
Cherry, thanks so much for your call. We're so sorry to hear about your diagnosis and we hope things go well for you. Dr. Reich, how would you answer her question?

REICH

11:53:45
You know, it's hard to comment about your particular situation, Cherry, but MS can cause those type of symptoms. It's certainly one of the things we would investigate in people who have recurrent problems with their bladder. And hopefully you're now on the road to doing something about it.

PAGE

11:54:08
Yeah, our thoughts are with you Cherry. You know, we can't answer every listeners' question on the air and I know that there's some people waiting with particular questions, but one of our guests, Dr. Shaffer, is going to stick around and answer questions about MS, diagnosing, treating, living with it. If you could send questions on Facebook, Twitter or on our website drshow.org he'll try to answer those afterwards.

PAGE

11:54:27
Tim Coetzee, we say that about maybe 1 in 500 Americans has MS. Why don't we have more accurate numbers about that?

COETZEE

11:54:34
You know, that's a great question. I think part of it comes down to the fact that, you know, trying to track the number of people who have MS in a country like ours with a health system that's not quite as unified is very challenging. And so we've partnered with the NIH to try to arrive at that figure and I think one of the things we need to do for the future is really come up with a better tool for being able to identify the number of people who actually live with the disease, both in the U.S. but around the world actually.

PAGE

11:54:58
Dr. Reich, you say that MS can be diagnosed accurately in 80 to 90 percent of the time. That's a lot of cases, 10 to 20 percent, where it's not getting accurately diagnosed. Why is that so high?

REICH

11:55:09
You know, it really isn't about the accuracy of the diagnosis. I think that the tools that we use to make the diagnosis now, which in people who have symptoms is -- mostly relies on MRI scanning of the brain, are really, really excellent. But there are cases where it is a little bit inconclusive. Sometimes in those cases we need to do other kinds of tests to look at the eye, the nerve from the eye to the brain. Sometimes we need to look at the spinal fluid. And sometimes we just need to wait to see if new attacks come and then we can know for sure.

REICH

11:55:47
But there are other diseases as well that can cause symptoms like MS and sometimes it's difficult to differentiate. It's very important to do so in order to put people on the right therapy. Our tools are getting better and better, our tools not only for making the diagnosis up front but also for monitoring the disease over time. But it's been an area where we have made huge strides in the last 20 years.

PAGE

11:56:11
Dr. Mowry, we heard from our caller Cherry who had just this -- in the past week gotten a diagnosis of MS. What do you tell new patients just received this diagnosis? What do you say to them? What's your advice?

MOWRY

11:56:22
Well, I try to educate them about what multiple sclerosis is, to talk to them about what they might expect in the coming years, to talk to them about therapies that we have to slow down the disease and to provide them with a sense of the optimism that I think we all feel, that I am hopeful that they will in that sort of boxing mentality be able to push their own disease back into the corner of the ring.

PAGE

11:56:48
Dr. Ellen Mowry. And we've also been joined by Dr. Daniel Reich and Dr. Timothy Coetzee, and by phone by Dr. William Shaffer. Thank you all for being with us this hour.

MOWRY

11:56:57
Thank you, Susan.

COETZEE

11:56:57
Thank you.

PAGE

11:56:58
I'm Susan Page of USA Today sitting in for Diane Rehm. Thanks for listening.
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