Diagnosing, Treating And Living With Multiple Sclerosis
http://thedianerehmshow.org/shows/2012-09-24/diagnosing-treating-and-living-multiple-sclerosis
The MS Walk gets underway in Portland, Ore., on Apr. 4, 2009.
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.
Guests
Dr. Daniel Reich
neurologist and diagnostic radiologist at NIH's National Institute of Neurological Disorders and Stroke.
Dr. Ellen Mowry
assistant professor of neurology at Johns Hopkins University School of Medicine and a specialist in multiple sclerosis.
Dr. Timothy Coetzee
chief research officer at the National Multiple Sclerosis Society.
Dr. William Shaffer
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.
Comments
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Also, the vit d link I've read about says that there are alot fewer cases the closer you get to the equator. So get out in the sun for 10 min. a day if you can. Don't be covered in sunscreen all over your body. Let some part of you get some sun or take vit d supplement. I don't know if the supplements are as good as the sunshine. Feldenkrais movement may help you. You can google Moshe Feldenkrais. It is slow movements to increase flexibility. Check with your doctor.
For Dr. Schaffer
After an emergency hospitalization for severe, sudden vertigo while driving last December, my latest brain MRI showed demyelination and diffuse lesions "like stars" and I was sent to MS specialists who found the results to be related to MS, but different. At Georgetown U Hosp in DC, the Neurologist has provided a tentative disgnosis of a form of MS in the "family" of TS called Nervous Myelitis Optica based on history, clinical findings -- and has ordered NMO-related blood tests and an updated MRI.
Dr. Schaffer, what is TS and specifically NMO disease and it's relation to MS, its progression, prognosis and treatment? How can I be certain that my situation is being diagnosed comprehensively and thourougly? What else might you recommend?
Note: seen a # of neurologists over years for worsening fatigue, pain and headaches w/ ++ANA and was diagnosed w/ Lyme disease in 2005. I've also experienced head trauma, multiple viruses, and high blood pressure and cholesterol.
Many thanks for your assistance.
- Valerie Weisman
(on Ed Fleischer's/husband's iPhone)
I am not an expert on this, and amalgam fillings may be quite dangerous, but will say I have MS and do not have one filling of any kind in my mouth.
I was diagnosed in 1998. I went directly to Avonex from my drs recommendation. I have a total of 5 neuros in that time. Long, long story. I stumbled across a story of a retired firefighter who was oxygen 24/7 and not walking. He was on a drug called low dose naltrexone after trying Avonex and a few others recommended by his neurologist. After taking a pill at night for a short time he was off the oxegen and walking.
I stopped my Avonex and got a rx for ldn. It costs me $35.00 for a 2 month supply ( full costs). 8 years ago I was slurring my words, bladder control problems, optic neuritis frequent losing sight, very low tolerance to heat,
Sick with flu like symptoms weekly, fatigue, depresses. Etc
Well in the time I started ldn I don't slur my words, my mind is sharp, bladder control is 98 percent normal, heat tolerance 70 percent better, eyes never had another optic episode, not been sick with a cold, a flu or anything in 9 years.
I wish doctors and healthy people would listen to their patients
Naltrexone lost the patent so the pharmaceutical companies couldn't make lots of money and it works for many aut immune diseases include
Ng many cancers
Google ldn info to learn about
Very little side effects
It is very frustrating as Allopathic Medicine, Pharmaceuticals and Medical Doctors have not cured anybody of any disease yet to date. All they are doing is treating and attempting to remove symptoms, often creating even worse side effects and more symptoms in the process. They fail to correct the problem. They operate under the flawed assumption that A causes B causes C and so forth in a linear fashion, when in fact in the body anything can cause anything. It is a mesh of connectivity moving both forward and back and following a Quantum physical model not a Newtonian linear model. Remove the communication interferences and stressors and feed the body and our innate God given internal intelligence will return the body to health and wellness.
I am a Chiropractor in south Florida who has seen many individuals diagnosed with Multiple Sclerosis as well as being very familiar with the disease, symptoms and treatments and their failures since 1972 when my father was diagnosed with MS. I see individuals that have been diagnosed with Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and other autoimmune deficiencies as well as individuals with no symptoms. I provide nutritional support for each individual based upon muscle testing AK which enables me to pinpoint stressors of subclinical nature and the natural whole food supplement or herb that the body requires to resolve the stress. These stressors can be in the form of environmental stress -Chemicals or Metals; Food sensitivities; immunilogical stress - Parasites, Molds, Fungus, Yeasts, Bacteria or Virus; or residual neurological effects of previous injury and scars.
Greetings,
I was diagnosed 34 yrs. ago at age 24. It wasn't until yrs. later that they were able to categorize my form of MS as Relapsing/Remitting. I am one of 7 children in a family that 3 of my siblings have been diagnosed with MS as well. We were not raised in a home with smoke and we received a lot of sunlight. I'm curious if you have information regarding the type of possible virus and or any additional environmental triggers that may be indicated as a possible cause of MS? With my strong family hx of MS, I was wondering if we are close to learning of any genetic markers that may indicate the possibility of genetically passing on MS to my children? Also, I wonder if we will be able to inquire as to what their risk factors would then be of passing on this auto immune illness to their offspring?
Thank you for the program on MS this am.
Heidi
I understand completely about the exercise and PT completely. I want somethinh to give me motivation. One would think that the MS would do it or even the family harassmemt. I feel that i have no discipline but is it my mind directing me in the wrong direction. I believe I think too much and it wears my brain out.
Why is there no discussion on the role of diet in MS? The Swank Foundation has over 50 years of evidence that shows the success of diet in treating MS.
The majority of doctors practicing today have very little to no nutritional training. Let's face it: diet protocol does not make money for pharma companies or healthcare organizations.
Dr. John McDougall just completed a study at the University of Oregon showing the treatment of diet on MS.
http://www.swankmsdiet.org/About%20The%20Diet
I have been researching, studying, and managing the symptoms and mobility changes of MS for over 20 years. In 2004, I considered suicide because the illness and the extreme side effects I experienced from all the pharmaceuticals left me depressed, lethargic, and hopeless.
Then, I started eating 1-inch-cube cannabis brownies
three times a day. I no longer take a laundry list of pharmaceuticals, am no longer depressed, and I feel better than ever.
I am walking a different path when I made the decision to give my body to cannabinoid science, to regenerate
my nervous system, to provide healing instead of just maintaining multiple sclerosis. I know in my heart it's more about juicing than smoking of this essential dietary nutrient.
Since then I co-authored The Cannabis Papers - a citizen's guide to cannabinoids to inform people of the truth that is being withheld from us. That every living being, with a spine, has a cannabinoid system. That cannabinoids and the cannabinoid system (CS) modulate and regulate all other systems within the human body. Cannabinoids are shown
to protect and heal other systems — such as the muscular, nervous, immune, reproductive, and digestive systems.
Cannabinoids are produced naturally in the body and are known to be able to regulate the immune response, it is
very possible that meds derived from cannabis may be used to correct the hyper-vigilant immune response that
occurs in MS. And it has been proven that cannabinoids KILL cancer cells.
Even though medical cannabis is illegal in Illinois, it's important to understand HEMP oil is not. I suggest to all that cannot access cannabis to start supplementing with HEmP oil, HEmP milk or HEMP seeds.
Check out Lulu.com - illinoisnorml.org - Amazon.com for more info on your cannabinoid system by checking out the book, The Cannabis Papers - a citizen's guide to cannabinoids.
Be well,
Julie
Although your program had some useful information (especially for the newly diagnosed) once again all we hear about is "modifying" medications for Relapsing Remitting.
My husband has primary progressive and the risks and side effects of the common medications on the market for RRMS keep us from trying something with no known effect against PPMS. They talk of being positive and excited about the future, but for PPMS sufferers, it's still too bleak.
I think doctors, researchers and drug companies need to look beyond the bottom line and and work on a CURE! Modifying and managing is okay, but that's like slapping a 1" bandaid on a 6" gash.
It's tiring to see the "poster children" for MS as walking, relatively normally functioning people. How about those millions of us beyond that point?
I enjoyed this show BUT I strongly suggest that more emphasis be placed on the presence of a person knowledgable about plant-based diet and nutrition - people like Dr. Neal Bernhard, Dr. Caldwell Esselstyn, T. Colin Campbell, Dean Ornish and Joel Fuhrman have all researched in depth the subject of diet and its influence on health and while most researchers and the medical/drug infrastructure of our society are exploring the possibility of synthetic solutions to disease, I believe much more attention needs to be given the potential for prevention (and potential for healing) through natural solutions via diet. Our health seems to be disintegrating in the US with such a high incidence of heart disease, diabetes, cancer and other diseases such as MS, and while I can't speak to the ability of a plant-based diet in preventing and/or helping cure MS at least lets give these other doctors and scientists (mentioned above) the chance to discuss this - let's not weight the conversation so heavily toward drug intervention. Societies with a plant-based diet have been shown to be much healthier than ours - we have had for decades crammed down our throats the (supposed) importance of meat and dairy, and this has evidently led to a decay in our health. It is time to give "the other side" a chance to enter into this conversation. Maybe many of our problems quite simply are caused by our dietary excesses and misguided leadership regarding what we really should be eating. Please read such books as The China Study (Campbell), Breaking the Food Seduction (Bernhard), etc. The word "diet" finally crept into the conversation at the very end of the show; in my view, that should have been front-and-center. It should not be regarded as an "alternative therapy," but rather as central to the discussion on improving health and possibly contributing to preventing such diseases as MS.
I am 37 and have had MS for 11 years. My symptoms were severe at first but slowed with medication. Most flares that I have had were when I was changing meds or off of them completely. Every MS patient is different. Some people have one episode and never see MS again. Some people are in wheelchair in a few years. I think it is so dangerous to suggest a vitamin or plant based treatment as a replacement therapy. All of my docs suggest I take meds and eat healthy and exercise as a compliment to my regular MS therapy. All of my doctors have my best interest at heart. And lets leave Ann Romney alone. MS doesn't care how much money you have. If you are uninsured you can get all the meds at a very reduced rate or free upon qualifying. My husband is a teacher and we manage just fine on the limited income.
I am Dr. Terry Wahls, prof. of medicine at University of Iowa. I have secondary progressive MS and have used a modified paleolithic diet plus meditation, exercise and electrical stimulation of my muscles to dramatically restore my function after 4 years of being in a tilt recline wheelchair. (After 7 years of steady decline despite taking the best drugs from the best people around the country - including Tysabri).
We are now conducting clinical trial testing this intervention in others with primary progressive MS and secondary progressive MS. It will be another year before everyone has gone through the protocol.
You can learn more about my personal story from the TEDx talk MINDING YOUR MITOCHONDRIA.
http://www.youtube.com/watch?v=KLjgBLwH3Wc
I have had MS for 32 years, and while I think the treatments available are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal. The doctors in the discussion today did not truly address "living with MS.” A person should not only rely or be concerned about drugs to solve their problems with MS--a healthy lifestyle should be maintained to prevent illness, stress, etc that can also prevent further relapses/damage to the CNS. In addition, there are many things a person can do to help with symptom management. I suffer with much spasticity, but by doing daily stretching and exercising, while taking baclofen, it keeps it in check. Why is nothing ever mentioned about the sensitivity of MS symptoms (e.g. heat) or the importance of learning good bladder management from a neuro-urologist? 80% of persons with MS will suffer from a bladder issue at some point! For more info about me and what I am talking about, please go to www.DebbieMS.com
I have had MS for 32 years, and while I think the treatments available are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal. The doctors in the discussion today did not truly address "living with MS.” A person should not only rely or be concerned about drugs to solve their problems with MS--a healthy lifestyle should be maintained to prevent illness, stress, etc that can also prevent further relapses/damage to the CNS. In addition, there are many things a person can do to help with symptom management. I suffer with much spasticity, but by doing daily stretching and exercising, while taking baclofen, it keeps it in check. Why is nothing ever mentioned about the sensitivity of MS symptoms (e.g. heat) or the importance of learning good bladder management from a neuro-urologist? 80% of persons with MS will suffer from a bladder issue at some point! For more info about me and what I am talking about, please go to www.DebbieMS.com
Being newly DX'd with MS May 14th. I want to thank the D.R. Show for bringing this subject to the public at large. I think we need more shows to educate people about this disease and the range of symptoms and severity of MS.
I hope to see those in the public eye bring more attention to their battle and how they are coping. I would hope those in the public eye will bring attention as to how expensive these disease modifying drugs like Avonex, Rebif, and Copaxone are. If you are lucky enough to be in the position of a Ann Romney or Montel Williams and have the means to afford these medications and other treatments they really need to draw attention to those who have a huge burden on their shoulders to manage this disease.
I am surprised that Drs. Reich and Coetzee, who are highly engaged in MS research, responded to the caller who reported a favorable response to daclizumab by talking about experimental therapies *without distinguishing between off-label prescribing (not research) and clinical trials (systematic investigation designed to create new knowledge)*. This is a major missed opportunity to educate the public about the difference. So many times I hear laypeople, and even scientists, talking about clinical trials as "a way to get access to the newest effective treatments". This is absolutely misleading--treatments that are established as effective would not need to undergo experimental investigation in clinical trials. Many many drugs that are approved by the FDA for certain indications are prescribed "off-label" by physicians--legally within the scope of physician practice, but not reliably backed by good scientific evidence. It is critical to have patient buy-in for participation in clinical trials but equally essential that patients fully understand the state of equipoise (ie lack of certainty about safety and effectiveness) when they are considering whether or not to participate in a clinical trial. Misrepresenting study drugs as "a new treatment" (implying some degree of established efficacy) increases distrust for the entire process of clinical science. To blur the distinction between off-label prescribing (which is not done in a systematic way, and therefore has limited value for resolving the lack of certainty) and actual clinical research that the expert guests immediately jumped to talking about, further reinforces the lay public's misunderstanding about what clinical trials are for.
I have been on Betaseron since 1996. The cost has gone from approximately $1000 to $4000 per month. Additionally, I am now on Medicare so I go through the infamous donuthole and I have to pay about $2000 copayment for 2 months. Will any of the MS meds ever become generic?