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Question:
One of my twin daughters was diagnosed with MS in late 2013 at age 11. She was first on Avonex (from 11/2013 – 8/2014) and then changed to Copaxone from 9/2014 to present. The doctor said she had developed antibodies to Avonex. What does that mean? Answer: Some patients have an immune response to medications, like interferon and can develop antibodies to the drug. These antibodies are the same proteins that we develop against infections to prevent us from getting sick, but in the setting of interferon a minority of patients develop antibodies to the drug. In that situation, the drug can become less effective. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis and Neuromyelitis Optica Program Director, Pediatric Demyelinating Disease Program Department of Neurology and Neurotherapeutics Department of Pediatrics Cain-Denius Scholar of Mobility Disorders University of Texas Southwestern Medical Center Question:
Why is IV Ig rarely prescribed as a DMT in MS ? It seems to be the only treatment that keeps my child stable. Answer: I guess the straight answer is that the clinical trials of IV Ig in different forms of MS have provided variable results. One of the more recent studies, best categorized as a phase II dose finding study, found no benefit for either dose tested on either clinical or MRI outcomes. I could review all the trial results over the past 20 years but it is easier to just sum these results: 1. IV Ig may have a benefit on delaying a second attack of MS after the onset of the disease 2. IV Ig is probably not a useful treatment of acute MS relapses 3. IV Ig may marginally reduce relapse rates 4. IV Ig probably doesn’t have a significant effect on disease progression later in the course of the disease 5. IV Ig may be particularly useful post partum to prevent relapses in the first 3-6 months after giving birth, although further studies are needed Most importantly, we simply do not know who benefits from IV Ig. Many of us believe we have patients who benefit from this treatment, but we have no way of determining this prior to treatment and there seem to be more highly effective alternative treatments. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Center Question:
My daughter is a twin – age 12. They are fraternal. Only one has MS (diagnosed at age 11). What's the chance that the other twin will get MS? The neurologist did find it interesting that one month before the double vision started (for the twin with MS) and eventually the MS diagnosis – her period started for the first time; but for the other twin (that doesn't have MS) - her period started a year later. Answer: The risk to fraternal twins of MS patients is higher than the general population, but still rather low (5-15% range depending on the study that is read). It is not clear why some people get MS and not others, but we do have data to suggest that it takes a variety of events happening at the right time. It takes a genetic risk, but then the person has to be exposed to the right trigger. Maintaining adequate vitamin D3 levels have been shown to reduce the risk of MS and would be something all families should consider when one child gets diagnosed with MS. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis and Neuromyelitis Optica Program Director, Pediatric Demyelinating Disease Program Department of Neurology and Neurotherapeutics Department of Pediatrics Cain-Denius Scholar of Mobility Disorders University of Texas Southwestern Medical Center Here is my question:
I know I read somewhere that the steroids for MS relapses are not the same type of steroids associated with the ones athletes take (that illegal kind) - is that correct? What is the difference between the two types of steroids? Answer: The term steroid simply refers to chemical molecules that share a common chemical ring stricture. There are many steroids that are important in biology. The steroids used in MS are corticosteroids and reduce inflammation. The steroids used by athletes are anabolic steroids and are similar to the hormone testosterone (leading to increased muscle mass). While they are both steroids, they have nothing to do with each other based on biologic activity. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis and Neuromyelitis Optica Program Director, Pediatric Demyelinating Disease Program Department of Neurology and Neurotherapeutics Department of Pediatrics Cain-Denius Scholar of Mobility Disorders University of Texas Southwestern Medical Center Here is My Question:
I'm 49 and an English teacher. For months I have had trouble finding the right words to use, and several times I have arisen from my classroom chair to find no feeling in my right leg. I have pain behind my right eye and the sensation that there is a hand pressing on the right side of my scalp. It seems like my right eye doesn't open all the way. I have horrible fatigue. There is a sharp pain that I feel in my neck sometimes that I hate most of all. I can also hear my pulse in my right ear. My children also say that I start sentences and don't finish them. I am so afraid. I have an MRI MRA of my head and neck in three weeks. Am I wrong in thinking this is classic MS? Answer: It would be difficult for me or any neurologist to be certain of any particular diagnosis given the facts provided. However, I do have certain concerns after reading your description. Pulsatile tinnitus (hearing one’s pulse in the ear) often has a specific vascular cause. This can include narrowing of carotid artery in the neck by atherosclerosis, traumatic dissection or fibromuscular dysplasia. A carotid dissection is an emergency and may be accompanied by neck pain (in your case on the right side) with drooping of the eyelid on the same side and unequal pupils (the right pupil being smaller than the left in your case). A carotid dissection under the correct circumstances does not require significant trauma. Other causes of pulsatile tinnitus may be serious as well, but less urgent. If you have right sided neck pain, right sided pulsatile tinnitus and drooping of the right eyelid, I would suggest a more urgent evaluation than waiting three weeks. It is possible your doctor already thought of this diagnosis and obtained a CT scan and CT angiogram. If this is the case then you can probably proceed with the evaluation as currently planned. These are my thoughts given the little information provided; many of your other symptoms such as fatigue and word finding difficulty are non specific in nature and do no raise any immediate concerns. Similarly, the right leg falling asleep may have many causes. As doctors it is most important that we exclude any potential urgent and serious medical problems first and then proceed with less urgent evaluations . Please contact your physician with the concerns listed in this response. I would not be surprised if he or she has already thought of these possibilities and is proceeding with an appropriate evaluation, but it would not hurt to ask for further reassurance. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Center Question:
I have had many symptoms of MS for years, and there is MS in my family. However my MRIs have reportedly been "normal" with the exception of my last one. It was done on a 1.5 Tesla machine and showed possible demyelination on the right optic nerve. Could this be a sign of MS? Answer: This is a difficult question to answer without more information. The optic nerve is difficult to image by MRI. It is far easier to see abnormalities within the optic nerve when it is acutely inflamed and creating the visual problems we seen in people with optic neuritis, but abnormalities suggestive of MS can be seen even in asymptomatic individuals. The fact that you have experienced, “symptoms of MS for years” but repeat imaging studies have shown little if any abnormalities consistent with MS is a very good sign. That is really all I can say given the information provided. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Center Here is My Question:
I take Avonex and have been virtually symptom-free, but would like to switch to Plegridy. I received a welcome packet that said that Plegridy has not been proven to be effective in people under 18 or over the age of 65. I am currently 62. Does the same warning apply to Avonex? Is it unwise to switch medications at my age? Answer: The age bracket mentioned for Plegridy (18 to 65 years) is based on the clinical trial protocol that only allowed this age range in the study. From a real-world perspective, physicians tend not to limit the use of medications based strictly on the clinical trial protocol. As far as Avonex is concerned, that clinical trial which was published in 1995 (called the Multiple Sclerosis Collaborative Research Group, or MSCRG) only included patients between the ages of 18 to 55. I'd recommend discussing the pros/cons of switching therapies with your provider. I certainly wouldn't get caught up on the age range as a contraindication for their use. Hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center |
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