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Guest Host: Susan Page
As many as one in 500 Americans has multiple sclerosis. Ann Romney, wife of the Republican presidential nominee, has MS. So did first lady Michelle Obama’s late father. It’s believed to be an autoimmune disease that damages neurons in the brain and spinal cord, sometimes leading to permanent disabilities. There is no cure, but there are a number of treatments available to alleviate symptoms and possibly slow the progression of the disease. Some of the most effective MS drugs can cause dangerous side effects. But one promising new drug won FDA approval earlier this month, and a decision on another drug is expected by year’s end. Guest host Susan Page will talk with a panel of experts, including a doctor who has MS, about diagnosing, treating and living with multiple sclerosis.
We received hundreds of questions and comments about diagnosing, treating and living with multiple sclerosis. Dr. William Shaffer is an attending neurologist at North Colorado Medical Center in Greeley, Colo. He completed a fellowship in multiple sclerosis at The University of Chicago. Though Dr. Shaffer, who treats MS patients and lives with the disease himself, couldn’t answer every listener’s question, this Q&A reflects a sampling. Some questions have been edited for space and clarity.
Q: I was diagnosed 20 years ago and have a very rare mild form apparently, which I am thankful for, with only minor changes of 3 additional plaques since diagnosis. I am having some memory issues that concern me. Has there been any progress on identifying symptoms based on where plaques are located? I’d like to be aware (or maybe not) I am not on any drug treatment other than amyitriptaline at night. — From Facebook user Amanda Norwood
A: Thank you for your question. The MRIs don’t correlate to how someone’s MS is. When I see a patient, I just say they have MS when they say, “How does the MRI look?” Now, I say that when someone has MS, even a mild form, they should be on a medication to hopefully keep the MS from worsening. I don’t know if the memory problems are a worsening of the MS. I say that because it is also important to make sure that you don’t have something else going on besides the MS playing a part. Sometimes, doctors like to blame everything on MS. Still, it is important to be on one of the disease modifying medications. I hope that helps.
Q: I’m listening to the discussion on MS and the doctor that said that there is no amount of B12 that is too high. Recently my doctor told me to take some B12 because of fatigue symptoms and I was told the same thing. I was told that there is no such thing as too much B12. I began taking the B12 sublingual 5000 mcg tablets. I would take several throughout the day because I had no fear of side effects, until the acne began. I went from a perfectly clear complexion to having acne all over my face and on my shoulders. When I stopped taking the B12 there was a noticeable change in my skin and after a few weeks of no longer taking it, my skin is as clear as it was. You can in fact take too much B12. — Email from Sarah Kochinski
A: I have not heard anyone tell me that about B12 and I have a lot of people on it. Thank you for telling me about your experience.
Q: I was diagnosed with MS in 2005 and have had only one exacerbation since my initial diagnosis, despite the fact that I have refused conventional drug treatment. I have opted instead to defend my nervous system using nutritional avenues, namely through a plant-based, dairy-free, gluten-free diet. I had my most recent MRI last weekend and the results show the disappearance of one lesion on my spine and the apparent reduction in activity on the lesions that are present on my brain. Could your guest please comment on why nutrition is not more of a focus for auto-immune disorders? — From Facebook user Emily Bragonier
A: When I see someone with MS, I do recommend being on a disease modifying medication. Now, your question about nutrition and MS is a good one. When I see someone in my clinic, I tell them that there are no, MS diets; I say that because as people with MS, we are vulnerable to people making money off, “The MS Diets.” Nutrition is important for people with MS to be as healthy as they can be. When people ask what kind of diet they should have, I tell them a balanced, healthy diet. Unfortunately, this is not what a large population of Americans follow.
Q: Could you comment specifically on Dr. Terry Wahls’ dietary protocol? — Email from Heather Switzer, Tempe, Ariz.
A: I tell people with MS that no specific diets have been proven for MS. I tell them that a balanced, healthy diet along with exercise is important.
Q: I have all the symptoms of MS described during your show (except for urination issues). Symptoms: nerve pain in arms, shoulders, neck, lower back and eyes; pinning and stitching around eyes, on my head, hands and arms; loss of ability to walk without notice (leg just gives out while I’m walking); extremely tired; numbness in feet especially after exercise; loss of concentration. I was tested and had a brain scan about 9 months ago. The brain scan was “clear,” so the doctor asked me to wait and see what happens. I am scared because I know I have MS. Should I go back to my doctor for treatment or arrange to see another specialist?
I’m currently taking RX – Synthroid for under-active thyroid function. — Email from S.F. McCloughan, Northern Virginia
A: It would be good to get another MRI. I usually wait 3 months, not 9 months, when I am watching someone for possible MS. Also, I get an MRI brain and cervical spine when I am evaluating someone for MS. You can see if your doctor will do this. If they won’t, then you could see another neurologist.
Q: I try to walk, sometimes around 2 miles. After a mile and a half or so, fatigue seems to set in, my right foot seems to have difficulty in tracking, starts to drag and kind of not stay straight, with a kind of limp setting in. Could you please say something about this? — From Facebook user Helene Oldweiler
A: When people have walking fatigue, I do tell them about Ampyra, “the walking pill.” If they don’t have history of seizures or kidney disease, I will try them on Ampyra. It is also important to mention Uhthoff’s phenomenon. This is the heat sensitivity. When we have an increase in our body temperature, which can happen with exercise, the symptoms can be more apparent. Then, when we cool down, the symptoms improve. So, I also tell people another thing they can do, is to wear a cooling vest when walking/exercising.
Q: I’m thinking of switching from Copaxone to BG-12 once it’s approved by the FDA. Could you explain the drug’s mechanism of action? How does it affect the immune system? — From Facebook user I’m thinking of switching from Copaxone to BG-12 once it’s approved by the FDA. Could you explain the drug’s mechanism of action? How does it affect the immune system?
A: Regarding BG12, it has two putative mechanisms of action that can lead to down regulation of inflammation and possibly neuro-protection. It has been shown to inhibit Nf-kB activation that plays an important role in the up regulation of the immune response. Additionally, it activates the Nrf1 transcription pathway that has been shown to defend against oxidative stress induced neuronal death. That being said, if Copaxone is working for you, I don’t recommend changing from it. Even more so, I am very reluctant to use a medication right when it comes on the scene as I like to wait and see how safe it is outside of studies.
Q: I’ve been diagnosed with relapsing/remitting MS since 1986, and started taking Betaseron in 1996. Since being on Betaseron, all my symptoms stopped. My question is, should I risk a relapse by switching to an oral medication, or continue with the tried-and-true Betaseron injections? — From Facebook user Amy Mann
A: If you have been doing well with Betaseron, I don’t recommend changing your medication. I have been on the same medication/injection since 2002 because it is working for me.
Q: I’d like to hear the doctor discuss Helminthic Therapy as a possible treatment for MS. Are there any trails regarding this treatment and studies regarding its effectiveness? — From krag451 via Website
A: What I will say is that there is so much going on in MS research in so many different areas, but this particular one has not impressed me at this time.
Q: I was recently diagnosed with Lupus and have similar symptoms that were mentioned by the physician with MS (burning in toes and numbness in left foot). Is this common to see similar symptoms in other autoimmune diseases? Are there specific symptoms only seen in MS? — From ValpoViking via Website
A: There are many things that can give burning and numbness. They are not specific to MS and other auto-immune disorders. This can be seen in things such as B12 and copper deficiency as well as diabetes to name a few.
Q: How often does MS run in families? I lost my cousin, who was diagnosed in his late 20’s and died in late 40’s. He has 3 sons who are now in their 20’s. Should we be getting them tested? — From MrsJLee via Website
A: Dr. Mowry had a great answer on today’s show when someone asked a similar question. She essentially stated that there is no reason to screen a family member for MS unless they have symptoms.
Q: Given that panelists cite low Vitamin D as a possible trigger for MS, are individuals with SAD (seasonal affective disorder) at greater risk for MS? — From Ruffles1 via Website
A: I have people that are out in the sun quite a bit and still have low vitamin D. The best thing you can do is have your vitamin D level checked and treated as needed. I check vitamin D levels on everyone in my clinic, even if they don’t have MS; I find so many people with low vitamin D.
Q: Do any of the disease-modifying meds, or the new oral meds being studied, actually help with the common and disabling symptoms of cognitive dysfunction and fatigue? — From asmukler via Website
A: The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.
Q: When my granddaughter was 10 years old she had a significant case of Epstein Barr. She is 20 today. Do you recommend that she get a brain scan or other type of screening in order to take steps as early as possible (in the event she has M.S.)? — Email from Deborah B.
A: Dr. Mowry had a great answer on today’s show on NPR when someone asked a similar question. She essentially stated that there is no reason to screen a family member for MS unless they have symptoms.
Q: Some people who have been diagnosed with Multiple Sclerosis are later found to have Lyme Disease instead. Are patients newly diagnosed with MS routinely screened for Lyme–even though Lyme tests are far from 100% reliable? — From saraspeak via Website
A: Lyme disease and MS can have some similar symptoms. However, Lyme disease does not have the same MRI findings as MS does. So, there is not really any reason to screen newly diagnosed MS patients for Lyme disease if the MS diagnosis is accurate.
Q: I’m sorry I was trying to e-mail a question to you during the show. Unfortunately, the MS has affected my typing, and when I get stressed, my typing gets worse. … I have had MS symptoms for over 4 years. At first they were cognitive and the doctors did not know what was causing it. In November 2010 my right side went numb. I was working on contract so we had no insurance. Spent all of our savings on tests. They determined in January 2011 that it was MS. Lost my job shortly after that because of the MS. Since we had no insurance and no money the only option was a natural approach. I had lost the use of my right hand almost completely and I was afraid I was going to have to stop driving a car because I could not make decisions about what to do at intersections, etc.
On the recommendation of a woman that treats MS with natural remedies, I went to an acupuncturist and she turned me around completely. She helped with diet, vitamins, exercise, etc., and I am far better than I was a year and half ago. My right hand is still not perfect, but it is fairly functional, I feel pretty comfortable driving, as long as I’m not stressed. I think fairly clearly, albeit more slowly than before.
I had heard that some MS medications were available free of charge people like me in low income situations. So I visited an MS clinic to see about it last month. They wanted me to start on Avonex. However, they did say some people describe it as “getting hit by a Mac truck” once a week. My wife took one look at the list of side effects and said I absolutely should NOT take it. I don’t believe I can cope with losing one to two days with flu like symptoms.
I went back to the clinic and they gave me some other options (rebiff and I can’t remember the other one). My wife believes that I am doing so well (improving) that I should NOT take any medication. My neighbor that has MS and the people at the clinic agree with the doctors on your program and believe I should start one ASAP. I am leaning towards my wife at the moment.
I would really like to know how many people have not gone on any meds and how that turned out? Is there any information anywhere about that? — Email from Scott
A: Now, I am someone who believes in taking a medication for MS even if they have no symptoms and are doing well. I always tell people that MS is always doing something even if it can’t be felt. I take something myself and have done so since 2002. It is so important to be on a disease modifying medication because once the damage is done, it might not be able to be repaired or come back.
I take Rebif and have only taken Rebif since 2002. When people talk about the side effects with these various disease modifying medications, I tell them that I have so many people on Rebif and other medications who tolerate it just fine.
I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.
I was giving a talk out in California a few months ago. A woman raised her hand and said, “I was doing well on my medication. However, my doctor said that I was doing well and could stop my shots. I did and about 6 weeks after that I had an attack. I’ve been in the wheelchair ever since.”
Also, all of the diseases modifying medication companies do help people out to get these medications. I always tell people don’t worry about the price as the pharmaceutical companies do help substantially in getting people medications.
MS. SUSAN PAGEThanks 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 REICHIt's great to be here.
DR. ELLEN MOWRYThank you.
DR. TIMOTHY COETZEENice to be with you.
PAGEWe'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 SHAFFERGood morning. Thank you.
PAGEWe 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 email@example.com, or find us on Facebook or Twitter. Well, Dr. Reich, describe for us what multiple sclerosis is.
REICHWell, 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.
PAGEAnd 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?
MOWRYThe 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.
PAGEAnd I understand why it would affect movement, what about vision. Why does it affect vision?
MOWRYSo 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.
PAGEWell, 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?
SHAFFERIt 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.
PAGEAnd how are you doing now?
SHAFFERI'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.
PAGEAnd 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?
COETZEEWell, 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.
PAGEIs that change, Dr. Mowry, that it's treatable, that you have some treatment options?
MOWRYAbsolutely. 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.
PAGEAnd if the treatments can cure the disease, what can they do?
MOWRYWell, 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.
PAGEDr. Reich, we have a new drug that was just approved for MS, tell us about it. What do you think of it?
REICHWell, 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.
PAGEWhat's the promising part? What is it about this drug that's different from the drugs that have come before?
REICHWell, 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.
PAGESo 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?
SHAFFERAgain, 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.
PAGEAnd Tim Coetzee, how close do you feel that we are to a cure? Is progress being made in that direction?
COETZEEYou 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.
COETZEEI 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.
PAGEOf 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?
MOWRYWell, 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.
MOWRYI 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.
PAGEWell, Dr. Shaffer, what do we know about what causes MS, or what triggers it, what prompts someone to suddenly develop MS?
SHAFFERIt'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.
SHAFFERSo 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.
REICHSo 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.
PAGEIs there an age that you usually see it?
REICHIt 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.
PAGEAnd disproportionately women, not men.
PAGEAnd why is that?
REICHThere 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.
PAGEWe'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 firstname.lastname@example.org. Stay with us.
PAGEWelcome 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.
PAGEWe'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.
HILDAHello. 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.
HILDAHe'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.
HILDAI 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.
PAGEHilda, 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.
COETZEESo, 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.
COETZEEWe 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.
PAGEI 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?
MOWRYWell, 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.
MOWRYAnd 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.
PAGEHere'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.
REICHOkay, 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.
REICHAnd 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.
COETZEEI 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.
COETZEEThe 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.
PAGEAnd, Dr. Shaffer, if you had a patient who had an experience similar to Hilda's son, what advice would you give them?
SHAFFERIt 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.
SHAFFERAnd I try a lot of different things.
PAGEIf 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?
SHAFFERWell, 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.
PAGEDr. 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?
REICHI 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.
PAGEWe 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.
LISAHi. I am a big fan of "The Diane Rehm Show."
PAGEGreat. Thank you.
LISAI'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.
LISAAnd 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.
PAGEWell, 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?
REICHWell, 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.
REICHAm 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?
COETZEEYeah. 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.
PAGESo, Dr. Mowry, who's most at risk for getting MS?
MOWRYWell, 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.
MOWRYWe 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.
MOWRYSo 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.
PAGEAnd so, is there anything that people can do to make it less likely that they'll get MS?
MOWRYWell, 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.
PAGEI'm Susan Page, and you're listening to "The Diane Rehm Show." Let's go to Celeste, calling us from Indianapolis. Hi, Celeste.
CELESTEHi. Can you hear me?
PAGEYes, we can hear you. You're on the air.
CELESTEYes. 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.
PAGECeleste, 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?
COETZEENo. 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.
COETZEESo 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.
PAGEAnd, 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?
MOWRYWe 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.
MOWRYSo 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.
REICHSo 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.
REICHAnd we hope that it will teach us a lot about what determines the risks and how we can potentially identify it before it occurs.
PAGESo, 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?
REICHAbsolutely. And probably more than one such trigger.
PAGEAnd what do you think the triggers are? What are the big triggers that you're looking at?
REICHWell, 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.
PAGEWe'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.
PAGEWe'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?
SHAFFERWith 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.
SHAFFERI 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.
PAGEAnd Dr. Mowry, you've been studying the link with Vitamin D levels. Do you recommend supplements on Vitamin D?
MOWRYRight 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.
PAGEWell 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?
MOWRYI 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.
PAGEHere'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?
COETZEEYou 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.
PAGEWell, and this would be managing the disease, not treating the disease, right, to living with the disease in a more successful way.
PAGE'Cause we've gotten questions about Yoga and acupuncture. Those would be those kinds of treatments.
COETZEEThat'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.
PAGEAnd 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?
REICHI 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.
MOWRYThere 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.
PAGEIt 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.
REICHThat'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.
MOWRYI 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.
PAGELet's talk to Debbie. She's been holding on. Debbie, thanks for being patient. She's calling us from Ellicott City, Md.
DEBBIEOh 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.
DEBBIEAnyways 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.
DEBBIEBut 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.
PAGEYou 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?
MOWRYSure. 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.
PAGEAnd 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?
REICHYou 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.
PAGEAnd what are the big side effects?
REICHThere's flu-like symptoms. I'll turn to some of the other doctors who actually see patients that suggest...
MOWRYWell, 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.
MOWRYSome 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.
PAGEDr. 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?
SHAFFEROne 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...
PAGEAnd do you take something?
PAGEYes, and so let me ask you, do you take something?
SHAFFERI do. I have since 2002.
MOWRYI 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.
COETZEEYou 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.
PAGEWe've gotten a lot of emails asking about a connection between MS and Lyme disease. Dr. Reich, is there one?
REICHNot 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.
PAGELet's talk for a minute about stem cell research. Is this something that could hold some hope for MS patients, Dr. Mowry?
MOWRYI 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.
REICHYeah, 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.
PAGEI'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.
CHERRYHello, how are you?
CHERRYI 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?
PAGECherry, 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?
REICHYou 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.
PAGEYeah, 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.
PAGETim Coetzee, we say that about maybe 1 in 500 Americans has MS. Why don't we have more accurate numbers about that?
COETZEEYou 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.
PAGEDr. 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?
REICHYou 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.
REICHBut 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.
PAGEDr. 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?
MOWRYWell, 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.
PAGEDr. 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.
MOWRYThank you, Susan.
PAGEI'm Susan Page of USA Today sitting in for Diane Rehm. Thanks for listening.
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