Diagnosing, Treating And Living With Multiple Sclerosis
Image used under Creative Commons from Flickr user Oregon Chapter, National MS Society
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.
neurologist and diagnostic radiologist at NIH's National Institute of Neurological Disorders and Stroke.
assistant professor of neurology at Johns Hopkins University School of Medicine and a specialist in multiple sclerosis.
chief research officer at the National Multiple Sclerosis Society.
neurologist at North Colorado Medical Center in Greeley, Colo. He has multiple sclerosis and treats MS patients.
Ask An Expert: Dr. William Shaffer Answers Audience Questions
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.