Ask the Doctor
By Dr. Jack Burks
Chief Medical Officer for MSAA
Q: I was diagnosed with RRMS in August 2011. My baseline has been good and my neurologist said I would benefit from stem-cell therapy, but my internal medicine doctor said I don’t need it. Why would my internal medicine doctor not want to help me achieve my goal of returning to normal health?
A: I will answer this with my short “bottom line” opinion. Although new, experimental trials with stem-cell therapy are encouraging, many questions remain. If and when stem-cell therapy research becomes conclusive and FDA-approved, you and your doctors will be able to make more informed decisions based on the potential benefits and risks.
While we often see news about stem-cell therapy in the media, it is still in very early phases of study. On the one hand, presently approved disease-modifying therapies have all been tested for many years – decades for some – with thousands of patients. On the other hand, stem-cell therapy has only been studied in recent years and only with limited numbers of patients. We also hear about individuals having little or no new disease activity following stem-cell therapy, but at the same time, we hear about other individuals who experienced severe and even life-threatening adverse events from this experimental treatment.
For these reasons, I do not have enough information (data) to recommend stem-cell therapy at this time. While I am optimistic that it may hold promise, it is “not ready for prime time,” until additional experimental trials are conducted and more evidence of both effectiveness and safety is shown. Your doctor is undoubtedly aware of the status of stem-cell research and is waiting until enough positive data are available and the FDA approves this therapy. In the meantime, I give the stem-cell researchers and the brave MS patients in the trials my admiration and best wishes for speedy answers. For more information on stem-cell research, please see page 40.
Q: I have had MS for 30 years and I am 68 years old. I use a wheelchair since I can’t stand or walk. I am able to use my arms, hands, and eyes, and I feel fortunate for this. However, I have one problem that really annoys me: I get hot spells that last an hour or even longer. They’re not hot flashes. I’ve asked my doctors, including my neurologist, and they don’t have any answers. Is this something that is MS-related? I’d like to figure out why I have these hot spells and what I can do to alleviate them.
A: “Hot Spells” lasting an hour or more must be terribly uncomfortable. They could be related to MS, or they could be caused by a different issue. I sent your question to some of my senior MS colleagues for their experiences and advice. My thanks go to Drs. Randall Schapiro and Donald Barone, eminent MS experts and members of MSAA’s Healthcare Advisory Council (HAC).
“Hot spell” symptoms, seen in a few MS patients, are not related to the type of “hot flashes” seen with menopause. In MS, they are usually less than an hour in duration, are not very frequent, are only mildly uncomfortable, and do not usually require treatment. They fall into the catalog of MS symptoms named “paroxysmal dysautonomia.” Paroxysmal dysautonomia is an intermittent dysfunction of the body’s autonomic nervous system, which may cause the symptom of intermittent hot sensations for MS patients. Treatment, while not often needed, may include seizure medication such as carbamazepine, gabapentin, pregabalin, valproate, lamotrigine, and others. If not successful, your doctor may consider beta blockers and calcium channel blockers. I mention these medications if needed to help guide your treating physician.
One precaution: My colleagues both recommended an evaluation for non-MS causes such as endocrinopathies, carcinoid syndrome, and pheochromocytoma. These are three uncommon conditions of the metabolic system in the body that may cause flushing episodes. They are usually associated with many other symptoms that you do not seem to have. Again, please share this detailed medical opinion with your doctor and I wish you success in your search for relief.
Q: I was diagnosed with MS in October 2007 after I had a stroke. In 2013, I began having problems with double vision. How can I prevent/improve this?
A: In the cover story of the Winter/Spring 2013 issue of The Motivator, visual problems were discussed in depth, since these are a major concern for many people with MS. To follow are excerpts from that section of the article, which you may find helpful in your treatment plan.
“Many functions are involved in seeing an object. Two major components needed for effective vision are (1) the ability to correctly image what is seen and (2) the proper coordination of the muscles that surround the eye and control its movements. Either or both of these functions can be affected by MS.
“The most common problems are decreased or blurred vision (caused by optic neuritis), double vision (diplopia), and shaking, involun-tary movements of the eyes (nystagmus). While optic neuritis results from inflammation and demyelination along the optic nerve, double vision and involuntary eye movements are the result of lesions in the brain stem, a part of the nervous system between the brain and cervical spinal cord.
“Diplopia, also known as ‘double vision,’ occurs when the muscles that control a particular eye movement are weakened and not coordinated. Although annoying, double vision usually resolves on its own without medical treatment. When diplopia comes on suddenly, it could indicate an acute attack.
“Whenever a visual problem arises, an ophthalmologist or neuro-ophthalmologist should be consulted. At times, the doctor may decide that the best treatment is to wait for the inflammation to go down and to see if the visual symptoms disappear on their own, reserving steroid treatment for more severe attacks. Other doctors may treat the relapse with steroids immediately.
“If the symptoms are severe, intravenous steroid treatment may be used to reduce the inflammation and accelerate the recovery process. The same steroid treatment used to treat other types of MS relapses is often effective in shortening the duration of visual problems. These are usually given via intravenous injection (IV) for a few days, but steroids may also be given orally. An example of high dose steroids would be 1,000 mg of Solu-Medrol® (IV methylprednisolone).
“Another line of action is through disease-modifying therapies (DMTs). Presently, 12 disease-modifying therapies are FDA-approved for treating the relapsing forms of MS. Several studies have shown that these can reduce the number and severity of attacks, which in turn reduces the development of visual difficulties.
“Several non-pharmaceutical options are also available to help cope with visual changes. For instance, an eye patch is sometimes used to treat diplopia (double vision) when necessary, such as when driving or reading. An ophthal-mologist may also offer additional ideas or treatments for specific visual symptoms.
“Individuals with MS experiencing visual problems are often comforted by the fact that these symptoms are usually temporary. As with other MS symptoms, as noted earlier, please keep in mind that visual problems in MS may also be worsened by stress, fatigue, infection, certain medications, or an increase in temperature. When possible, avoiding situations that could worsen the symptoms of MS will also help to minimize the occurrence of visual issues.”
Please note that the information on visual problems is from the Winter/Spring 2013 issue of The Motivator and was reviewed and edited by Robert K. Shin, MD. To view the article online, please go to mymsaa.org, select the Winter/Spring 2013 cover story under publications, and go to the section of the article on visual problems.
Jack Burks, MD is the chief medical officer 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 clinical professor of neurology at the Florida International University in Miami and has authored textbooks, chapters, and articles on MS.
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