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May 09, 2009
MS Roundtable from the Nancy Davis Foundation
My mom and I went to the MS Roundtable discussion at the Hyatt Regency Century Plaza today. The following are my notes from the discussion. I did not take short-hand from all speakers.
Introductory Remarks
Nancy Davis: If something is not working for you, you owe it to yourself to read, research and talk to other MS patients.
Dr. Hauser: MS is one of the great mysteries of medicine. Number of MS cases has increased, with the frequency getting greater over the last 100 years. This increase largely, maybe entirely, affects women. There are inherited and environmental factors that lead to this disease. Environmental factors may be more important than inherited ones.
There are 3 new technologies that are helping to fight MS:
- Molecular biology: soon we'll have a blood test to determine whether patients are at risk and how MS will behave in an individual (based on the disease's biomarker).
- Imaging
- Computers and Information Technology: we're using these to help understand what is triggering MS in the environment
Dr. Les Weiner: In California, we're excited about stem cells. There are still federal laws that impede stem cell research. It is a step forward that the new administration understands we need science not only as an engine of the economy, but for our wellbeing. There are currently 12-14 phase 3 trials for new MS medication and some of these are pills. [As opposed to the normal treatment regimen which involves injecting medication through long needles.]
Dr. Kaplan: Thoughts, behavior and feelings are an important aspect of disease management. MS can cause clynical depression because of inflammation affecting the brain. Suicide is the third leading cause of death with MS. Yet, there is hope because depression is the most treatable symptom of MS. The brain can healt itself if you shut off the inflammation. The federal government is funding MS research at 10%, meaning that 9 out of 10 research grant requests are denied. This is why the Nancy Davis Foundation and other private funding sources are so desperately needed.
Dr. Howard Weiner: We're conducting a national history study, following 1,000 patients to find out why some patients do well and why some patients don't do well. We're looking for the signatures of individual patient. There is a potential for blood tests for what stage you're at and whether you'll enter the progressive stage. Five oral therapies are in stage 3 trials. We're trying to develop non-toxic oral therapies. And there is a very good chance for a happy, fulfilling life with MS.
Dr. Waubant, pediatric MS specialist: The youngest patient had symptions at 1.5 years old. We're working to understand better why some patients develop symptoms younger, maybe environmental and this will help understanding MS in general.
Dr. Bourdette: We're working to understand why nerve factors die in progressive MS. We believe there is an energy failure in the never fibers: mitochondria become non-functioning. Our particular target is to use MRI to measure the amount of ATP in brains of people with MS compared to healthy brains.
Answering Questions from the Audience
Will stem cells help create a new generation of medicine for MS?
Dr. Les Weiner: My answer is yes, with no real data to support my answer. This is a hostile environment for stem cells to enter. It is a promising field, but a difficult area to be certain about. We have to be slow in developing trials because you don't want to cause cancer. Brain tumors are a potential side effect of stems cells. We're optimistic that we'll be able to make stem cells from skin rather than embryonic origin. We have to go slowly in developing stem cell therapy because of the need for safety precautions.
Is a cure just around the corner?
Dr. Howard Weiner: There are three definitions of curing:
- Halt the progression of the disease. Treatments currently allow many people to live a normal life. Not everyone, but all of us have patients who are healthy. It is important to treat MS and treat it early, at the first signs of disease.
- Rebuild the nervous system: treat people so they get better. Rebuilding myelin sheath. This is the next frontier.
- Did scientists find a cure for polio? No, we figured out a way to prevent polio rather than curing it. We have programs now trying to prevent MS. We're using blood tests to identify kids at risk to try to treat them so that they never come down with MS.
How do you deal with family members who are over-bearing in their desire to help you with your MS?
Families mean well, but are more frightened than you are. Educate yourself and educate your family and they'll get sick of learning about it.
How do you feel about mega doses of Vitamin D, e.g. 50,000 IUD?
Low serum vitamin D levels increase the risk of getting MS. Most people don't need more than 1,000-2,000 IUD/day. Vitamin D turns down the activity of the immune system.
Nancy Davis: I read, talk, and educate myself about MS. Embracing it, understanding what to do. Live every single day to its fullest. Don't put something off that you can do today. I have MS, but MS doesn't have me.
Dr. Waubant: pregnancy is safe and decreases the risk of progression of the disease. Knowing this taught us the role of hormones in regulating the disease. Up to three months after delivery, there is an increased possibility of symptoms. Breast feeding may decrease the risk of exacerbation.
Dr. Kaplan: Reviewing blood samples of depressed patients, their white blood cells were twice as aggressive as normal rates. Therefore, its important to treat depression to ensure that white blood cells stay at normal levels. A number of studies are being done to determine what drugs protect neurons. SSRIs and lithium (anti-depressants) stimulate neuron production. There are medications that worsen moods: e.g. steroids can cause moods to up or down. It's important to treat those mood swings, either with talk therapy, medication, or a combination of the two.
Dr. Howard Weiner: Optic neuritis is vision loss due to inflammation of the optic nerve. Can be seen in the retina, therefore inflammation is happening where there's no myelin. This may show that MS attacks substances in the brain other than myelin. We are researching a biomarker to determine whether people with optic neuritis will go on to have MS within the next year.
Dr. Waubant: In the months before becoming pregnant, you should stop taking MS medication. In children after age 11 or 12, symptoms are the same as in adults. In younger children, there are other symptoms, including difficulty thinking, drowsiness, and milder symptoms that are often ignored.
MS survivors: Several have used homeopathic doctors to treat the symptoms of MS. Restrictive diets and visual healing have also helped. It is proven that a low fat diet is an anti-inflammatory diet. Fish oil has anti-inflammatory effects. Currently, they are initiating trial of a vegetarian diet as a way of treating MS. De-stressing your life is the best thing you can do.
Nerves are activated through excercise. You need to protect and use your nerves. Even people who have difficulty walking. Excercise causes neurogenesis and is an anti-depressant. It is crucial to keep your wiring active and excercise is good for your brain.
Symptoms of lime disease and MS seem similar. Are they connected?
They are not related. There is no direct connection. But it should be ruled out during diagnosis, because it can imitate MS.
Sometimes, there is a connection between MS and other auto-immune diseases. Psoriasis and thyroid disease can track with MS. Children of people with MS have an extremely low risk of getting the disease.
The earlier the treatment of MS the better. When you're stable, you should have an MRI once a year. When you're changing medication, you should have an MRI once every 3-6 months.
Of all the medication out there, there is a drug for rheumatoid arthritis that can trigger MS. No other drugs have been shown to trigger MS.
Posted by cj at May 9, 2009 04:28 PM