Ask the Doctor
By Dr. Jack Burks
MSAA’s Chief Medical Consultant
Can There Be a Genetic Predisposition to Multiple Sclerosis?
Q: I’ve had RRMS for 20 years and I do okay with my issues, but now my son has been diagnosed with MS. He was originally diagnosed with trigeminal neuralgia more than a year ago. My question is that while I know MS is not hereditary, I understand that there is some kind of predisposition in the genes… what exactly does that mean? I don’t know of anyone else in my family who had MS. Your thoughts on this matter are greatly appreciated.
A: I am sorry to hear that your son has also been diagnosed with multiple sclerosis. The risk for this happening is about 2 percent. The causes of MS are not fully understood, but genetic factors have been implicated. Many genes that influence the immune system have been identified as being “over represented” in MS patients.
The risk for MS in the general population is about one in 1,000 in the United States. The risk for a close, blood relative (your son) increases to about 2 percent. The MS risk for a non-identical twin of a person with MS is about 5 percent. The risk for an identical twin is about 30 percent. Therefore, a family history of MS may increase the risk – or “predispose” someone in the family to MS. If MS were a hereditary disease, the risk might be 50 percent for any close, blood relatives (versus about 2 percent) and we would likely be able to identify the specific genetic link. However, that is fortunately not the case in MS.
In an earlier issue of The Motivator, MSAA featured a cover story titled “Family Genes & MS.” This may be accessed by going to mymsaa.org/ws11cs. This article defines certain genetic terms and provides a good overview of genetics and MS, along with noting the direction of future research. The article explains, “What can be said at present is that genes have some role in susceptibility to MS but exact mechanisms remain unclear. Nevertheless, genetic epidemiological studies in MS have clearly shown that the increased frequency of MS seen within families is a result of relatives sharing DNA and not the common family environment.” I hope this information will be helpful to you.
Q: I was diagnosed with RRMS in December 2014 at the age of 28. I have been taking Gilenya® (fingolimod), and seem to be doing pretty well. My doctor also increased my dosage of Topamax® (topiramate) and started me on Cymbalta® (duloxetine delayed-release capsules) for depression.
Since the age of 12 I have suffered with chronic migraines and nothing really helps. I am now taking all of these drugs for MS, depression, and migraines. In addition, I have spasticity in my legs. I have major problems with cognition and fatigue. I recently completed a neuropsychological exam and my scores were “consistent with disability.” I am very concerned that my cognition has declined in such a short period of time.
My questions and concerns are:
- Is there a way to improve memory, cognition, and fatigue without medicine?
- Could medical marijuana help with migraine relief and spasticity?
- Why don’t neurologists talk about diet and lifestyle changes?
A: Decreased memory/cognition, fatigue, migraine, headache, and spasticity are all frequent with MS. I am pleased that Gilenya is helping. However, I am concerned that you are still having many problems, including memory and cognition issues, after being diagnosed less than two years ago. I suggest you seek help for your multitude of problems from a comprehensive MS center, where experts can provide help in several areas, including disease-modifying therapies, symptom management, rehabilitation (including cognitive rehabilitation), wellness, nutrition, and lifestyle.
For cognition specifically, exercise has been shown to improve cognitive performance. In one study, walking on a treadmill appeared to have the greatest effect. Swimming is another good option. Computer programs designed to help with cognition retraining have also proven to be effective. Your neurologist or a physical or occupational therapist may have more information on where to get this type of computer program.
For more information on cognition and MS, please refer to our cover story from the Winter/Spring 2015 issue of The Motivator, “Cognitive Issues with Multiple Sclerosis: Research, Strategies, and Support,” found at mymsaa.org/ws15cs. In this article, you’ll find a good deal of information and additional resources on this topic.
As for marijuana, I have concerns about long-term cognitive problems with daily marijuana. Some marijuana research shows troubles with cognition. While marijuana may help your headache and spasticity, other better-researched treatments might be tried first. As for specific diets or wellness lifestyle strategies, many neurologists do not feel qualified, unless specifically trained. However, as I noted earlier, comprehensive MS centers are likely to have MS experts in these areas.
Q: After 11 years on different disease-modifying therapies, I was not able to tolerate the side effects. After discontinuing these treatments, I have been on 3 mgs of Low Dose Naltrexone (LDN) for the last four years. I have several symptoms, but no major exacerbations. MSAA’s MS Research Update listed 32 medications and not one mention of LDN. Why is there no research on this drug?
A: This is a great question that involves many facets related to MS research. First, LDN may have some positive effects on some MS symptoms, according to various small pilot research trials. However, it is not believed by most MS experts to have significant disease-modifying effects in MS.
Economics play a role in decisions to test drugs. Since clinical trials in MS leading to FDA approval may take five to 10 years at a significant cost, the risk of failure or only marginal symptom relief with LDN is not likely worth this costly investment to the pharmaceutical companies. Some pilot MS research on LDN several years ago was encouraging for some symptoms, but it did not appear to have the “blockbuster” effect to risk a huge financial investment. Patent issues and other factors also play a role in the decisions to pursue clinical trials for any drug. Therefore, LDN is not FDA approved and is only used by a small percentage of patients, most with progressive forms of MS, where no FDA-approved drugs are available at this time. My experience is that some people feel better and some do not. It is not expensive and does not appear to be harmful, although unknown risks might appear with closer scrutiny.
MSAA’s MS Research Update reports on current clinical trials. The update covers recently published research in neurology journals with data presented at major MS meetings. LDN research data has been lacking in recent MS meetings and no new LDN research is available to discuss. In the meantime, I’m pleased that you are benefitting by taking LDN and hope that these positive effects continue for you.
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c/o Dr. Jack Burks
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Jack Burks, MD is the chief medical consultant for MSAA. He is an international MS neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies and advises patients, families, MS organizations, and healthcare groups. Dr. Burks is a Professor and Director of the MS Program at Nova Southeastern University in Davie, Florida and has authored textbooks, chapters, and articles on MS.