Ask the Doctor: Treatment Questions and Diagnostic Issues
By Dr. Jack Burks
MSAA’s Chief Medical Consultant
Q: I am a 53-year-old female just recently diagnosed with CIS (clinically isolated syndrome), although I have experienced MS symptoms for many years and have been told it was fibromyalgia, EBV (Epstein Barr Virus), chronic fatigue syndrome, or similar conditions. Over the past year, I have developed numbness and tingling sensations with tremors, muscle spasms, and stabbing pain all over my body.
After seeing a new doctor in June, I was referred to a neurologist and he ordered an MRI, spinal tap, and extensive blood work. The MRI results showed evidence of lesions but very small ones. The spinal results showed high levels of protein (c-reactive, I believe) but no indication of oligoclonal bands (or “O-bands”), which puzzled him, leading to the clinically isolated syndrome (CIS) diagnosis. My MS panel blood work showed low red blood cell count and seriously depleted Vitamin B12 and D levels. While my doctor explained that the low vitamin levels are common in MS diagnoses, he also said that could be the reason for the numbness and tingling, muscle spasms, balance problems, and debilitating fatigue. I am now receiving B12 shots and taking over-the-counter Vitamin D in high doses.
Currently I have sharp stabbing pain, lost sensation, as well as pins and needles in different places around my arm, shoulder, and hand as well as my toes and feet. I am in almost constant pain in the mid-thoracic area of my back and also in my rib area on both sides. My question is, should I have an MRI of my entire spine, or is the brain and cervical MRI sufficient, along with the CIS and vitamin-deficiency diagnosis?
A: Thank you for sharing your challenging story. In terms of what may help establish a diagnosis of MS, a spinal MRI with gadolinium (GAD) contrast certainly seems worthwhile. The complete spinal MRI may help evaluate your symptoms such as pain, tingling sensation, muscle spasms, balance problems, debilitating fatigue, and pain in the mid-thoracic area.
Was your brain MRI done with contrast? If not, a repeat brain MRI with gadolinium enhancement may also be useful. The high protein in your spinal fluid may be “gamma globulin,” which supports an MS diagnosis, even without “O-bands.”
Fortunately, you are taking Vitamin D pills and Vitamin B-12 shots. Depleted Vitamin B-12 can cause a serious “subacute combined degeneration” of the spinal cord, a disease which can mimic some MS symptoms. Vitamin D is often low in people with MS. Your diagnosis of CIS is defined as an “initial demyelinating event,” which indicates a high suspicion of MS. You apparently have had several additional events, which might be related to MS.
If uncertainty remains, your neurologist may recommend that you get a second opinion from an MS center as well. These centers can offer a comprehensive approach. Additionally, should you receive a diagnosis of MS, you may benefit from an MS disease-modifying therapy. Other treatments and other options may be discussed with your neurologist and possibly a team at an MS center. I hope you are able to identify what is causing your symptoms and find a treatment that will best address your problems.
Q: I am 41 years old and was diagnosed with MS in 2011. In November of 2017, I had a major relapse to where I had to be on short-term disability. I do not think I will be able to go back to work, even though I want to work. I’m trying to find alternatives to Ocrevus® (ocrelizumab) and Vitamin D. I have heard about coenzyme Q10 (CoQ10) and mitochondria (MitoQ®) supplements. Do you think those will help in any way to improve my walking and to use my hands and arms?
A: Coenzyme Q10 (CoQ10) and MitoQ are antioxidants, which are thought to protect the body’s cells and mitochondria from oxidative stress – a part of the aging process. Antioxidants may also play a role in metabolism and provide more energy. Proponents of these antioxidants believe that additional health benefits, such as lowering blood pressure or treating other conditions may also result, but these claims have not been proven. MitoQ is a branded version of CoQ10, and is marketed to be stronger, enhanced for greater absorption, and targeted toward protecting mitochondria.
A number of people with MS take antioxidant supplements with the hope of better long-term health. HOWEVER, no research indicates that these antioxidants are specifically helpful for MS or its damage to myelin. Antioxidant supplements are NOT an alternative to an FDA- approved, disease-modifying therapy (DMT) for MS. Individuals who may be helped through a DMT need to adhere to their treatment plan to gain the best possible results.
Although helpful, Ocrevus and Vitamin D are not your only options. If you are looking to make a change, I suggest you talk to your neurologist. He or she may want to refer you to an MS center for a second opinion. MSAA’s Helpline can assist you with locating an MS center, if needed. However, if you are not taking a DMT at this time, do not wait until your next relapse to discuss your options with your neurologist or the specialists at your closest MS center.
Q: Fourteen years ago, my daughter had trouble with her legs. After an MRI of the brain, the neurologist saw a lesion and said she had MS. She then went to another neurologist who disagreed, based on her response to some other type of test he gave her. Now 14 years later she is having pain in the legs and numbness in the feet. She has had an MRI of the spine and found to be in very good condition per the doctor. She also had an electromyography (EMG) which did not show anything. This has been going on for most of the 14 years to some extent or another. What would you recommend she do?
A: Your daughter has a 14-year history of recurring problems with her legs and feet. One MRI may have shown an MS-like brain lesion, according to one neurologist, but not to another neurologist. Her recent EMG (electromyography) is apparently normal. This test measures nerve and/or muscle health.
However, MS is a disease of myelin, the covering or insulation of the nerves (which are known as “axons”) in the brain and spinal cord. The EMG can be normal in people with MS. Her normal spine MRI does not eliminate MS or other diagnoses. The abnormal “lesion” in her brain MRI 14 years ago is worrisome. Getting a second opinion by an MS specialist at an MS center may be of benefit to you. MSAA’s Helpline Specialists may be reached at (800) 532-7667 and can help locate a nearby MS center, if needed.
Q: My doctor wants to put me on Tecfidera® (dimethyl fumarate). My blood tests were positive for the JC virus. I also have no spleen. I am in fear of progressive multifocal leukoencephalopathy (PML). What are my chances of getting PML?
A: Your good news is that similar to the other approved disease-modifying therapies for MS, Tecfidera is a very good treatment for MS. However, you have valid concerns about having the JC virus antibody present in your system, which may slightly increase your risk for progressive multifocal leukoencephalopathy (PML), a serious and sometimes fatal brain disease.
Overall, your risk for PML on Tecfidera is very small. Only a few PML cases have been reported in MS patients on Tecfidera. Strategies to reduce this small risk even more is to monitor your JC virus antibody regularly, get regular MRIs to check for early asymptomatic (without symptoms) PML, and to check your levels of white blood cells (lymphocytes) regularly. Low lymphocyte levels are associated with an increased risk of PML.
In addition, ANY new symptoms of brain function worsening, including psychiatric symptoms, need to be reported to your doctor quickly. Early treatment of PML is crucial to a better treatment outcome. Again, your chances of getting PML are very low, less than 1 percent, and careful monitoring that will allow for early treatment can reduce your risk of severe PML.
In summary, a discussion with your doctor concerning the benefits and potential risks with Tecfidera, as well as defining ways to further reduce your risk of PML, is very important.
Q: Would you comment on the difference between maintenance and induction therapies? This is a topic that many MS patients may not be familiar with.
A: Your question on “maintenance” versus “induction MS therapy” is a “hot topic” that is debated in MS international meetings. For those not familiar with the debates, let me explain the concepts.
In general, MS experts recommend first line “maintenance therapy” based on the potential benefits and low risks of the many older, self-injected MS therapies, such as the interferons and Copaxone® (glatiramer acetate). Patients were treated for many years with one drug as long as the results were satisfactory, and these individuals tolerated their medication well. For example, Betaseron researchers have followed individuals for more than 20 years of continuous Betaseron therapy and have found remarkable results in general on preventing disability and even death while on treatment. Many individuals taking the older medications have only experienced minor side effects and few or no adverse events. However, new medications are now approved by the FDA, often with even better results than the standard MS therapies. Unfortunately, these new medications may have more serious side effects and the long-term risks are not known. For this reason, many doctors who specialize in MS start patients on the older therapies and only change treatments if a patient has deteriorated or suffered unmanageable side effects.
With the development of these newer and more powerful medications, the controversial concept of “induction therapy” has been introduced. The concept states that individuals with very active MS should be put on a stronger “induction therapy” to aggressively stop the disease activity and transform a very aggressive MS disease course to a much more stable MS. After stabilization, the individual may be able to switch to an MS medication with fewer risks or potential side effects. Additionally, some of the highly effective treatments may not require retreatment for many years, if ever. It is too early to know. Maybe an intermittent retreatment may be repeated after several years, but only if the MS becomes active again.
The concept of induction therapy in MS is not universally accepted among MS specialists. This is because the risks versus the benefits are not clear-cut, and the long-term risks are not yet known.
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 as well as new MS centers. He also advises patients, families, MS organizations, and healthcare groups. Dr. Burks is an adjunct professor at Nova Southeastern University and clinical professor of neurology at Florida International University. In addition, he has authored numerous textbooks, chapters, and articles on MS.
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