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Here is My Question:
Dr. Kinkel, Why is it that we can treat this disease with immunosuppressants which causes our kids to be susceptible to getting sick which in return can cause flare ups when they get sick? Answer: This is a great question. In fact we try to avoid immunosuppressants whenever possible. Most of the common first line disease modifying therapies (DMTs) are immunomodulators that alter specific inflammatory responses without globally suppressing the immune system. All the interferons and Copaxone are examples of immunomodulators; these DMTs do not increase the risk of infection and interferons may even decrease the risk common viral infections. Aubagio rarely increases the risk of infection since lymphocytes are able to use the "salvage pathway" to proliferate (reproduce). Other drugs like Tysabri and Gilenya have powerful but selective effects on the immune system and minimally increase the risk of common infections, although certain very rare infections (like PML) can have devastating consequences if not detected early. Both Tysabri and Gilenya can increase the risk of shingles as well. Shingles, as you know, is a reactivation of a dormant infection with varicella, the virus that causes Chickenpox. Tecfidera does have minimal suppressive effects on certain lymphocytes, particularly CD8 positive lymphocytes, and may increase the risk of infections if the lymphocyte count drops too low. This is the reason for monitoring lymphocyte counts in patients on Tecfidera. Rituximab selectively targets and destroys B lymphocytes expressing CD20 but this effect rarely lowers immunoglobulin levels or increases the risk of common infections. Certain DMTs used to treat MS clearly are immunosuppressive and significantly increase the risk of infection; these include alemtuzumab (Lemtrada), cyclophosphamide and chronic corticosteroids. Of all these treatments, it is rare for anyone to be treated with chronic corticosteroids these days as the risks outweigh the benefits in most circumstances. Generally, MS specialists recommend those treatments with the fewest suppressant effects on the immune system as first line therapies to avoid infections and only escalate treatment to those drugs that can significantly suppress the immune system when the potential benefits outweigh the risks. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Program Question:
What are cognitive deficits? Answer: I am going to make a confession. I have a pet peeve. My pet peeve is how often the words “Cognitive Deficits” are thrown around when talking about (and to) pwMS. When my patients first come to me, none of them can really explain to me what the phrase “Cognitive Deficits” means. All they know is that it is used a lot in connection with a diagnosis of MS, and that they know it has something to do with how they think. And that it’s a little scary. This is how I clarify it. Cognition has to do with our ability to think. And cognition has parts. Some of these are attention, memory, problem solving, reasoning, planning and organization. Because all of you with MS are so unique, you really can’t throw the blanket phrase “cognitive deficits” on everyone. Some individuals have increased difficulty paying attention, some have problems figuring out the steps needed to complete a task and some can’t remember where they need to be tomorrow. Some individuals can do all of this, but it takes twice as long. That is the role of the therapist, to tease out how the changes in the ability of the pwMS to think, is having an impact on their daily lives. Does that increased difficulty paying attention mean that the pwMS is not able to get all the information needed from meetings at work? Does the increased difficulty figuring out the steps needed to complete a task mean that housework is not being completed or the dishes are always piled up to the ceiling? Is the pwMS forgetting where they are going as they drive down the road? The link below goes into more detail… http://psychology.about.com/od/cognitivepsychology/f/cogpsych.htm Cognition can be evaluated by several different professions. Neuropsychologists will provide the most comprehensive analysis of attention, memory etc. Speech Language Pathologists and Occupational Therapists can do simpler cognitive or cognitive- linguistic evaluations, and then set functional goals with the patient’s input and treat the deficits. Psychologists, social workers and counselors can also administer tools to assess what “part” of cognition may be having a negative impact on daily function. These changes can happen early in the MS disease process, so if you feel you are thinking differently, ask for a referral to be evaluated by one of the professions mentioned above. Lori Ann Kostich M.S. CCC-SLP Mandell Center for Treatment and Research #cognition #cognitivedeficits #multiple sclerosis #MS Here is My Question:
i am a 39 year old woman, diagnosed with MS in 2005. I was on Avonex from Aug 07-Oct 10, Betaseron from Nov 10 to Dec 12 and since Jan 13 on Tysabri. I have completed 29 infusions of Tysabri. I am JCV +Ve with index of 0.49. My neurologist has suggested I switch to Tecfidera. What should I do? Answer: It is very hard to make an individual recommendation without knowing all the details of your case, but let me proceed with a my response based on several assumptions; first, I will assume that I would have placed you on Tysabri initially; second, I will assume that you have remained completely stable on Tysabri since starting treatment (assuming you have been on treatment continuously); third, I will assume you have never received any immunosuppressive treatments; and fourth, I will assume you tolerate Tysabri well with no particular complications or side effects. Based on these two assumptions, I would not be inclined to alter your treatment for the following reasons: 1. Your risk of PML (progressive multifocal leukoencephalopathy) with a JCV antibody index less than 0.9 is very rare (less than 1 in 3,000 patients treated with Tysabri for more than 2 years); In fact I do not think there has been a case of PML in a patient with consistent JCV antibody index levels below 0.6. This would suggest the risk may be less than 1 in 10,000 treated patients. 2. There is a known rare risk of PML with other treatments, including Tecfidera, so why alter treatment if Tysabri is currently working well. We do not recommend any medications on this site as we are not your physician and do not know the specific details of your case, but I hope answer helps you and your neurologist. I’m sure you will find him/her receptive to a discussion if you share this information. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Center #Tysabri #Tecfidera #MS #multiplesclerosis Here is My Question:
I am a dancer and I've been having increasing difficulty controlling my body. I had a tremor in my left arm that made me fall out of my turns. That went away but now my right leg goes numb and I fall down nearly every class. Remaining upright takes so much effort that my skills are regressing. I've been diagnosed with Hashimoto's and adrenal insufficiency, both managed with medication. However, my inflammatory markers were all high during my last round of blood work. My doctor tells me I've already developed all the autoimmune diseases I will have but I'm wondering if MS is a possibility. Should I pursue a second opinion? If so, what sort of doctor should I see? Answer: If you have not been evaluated by a neurologist since these symptoms have started, doing so is advisable. A. Scott Nielsen MD MMSc Virginia Mason University Multiple Sclerosis Center HealthCare Journey is pleased to be introducing Multiple Perspectives in Multiple Sclerosis. There is so much information on MS research out there that it can be overwhelming to know what is important and what isn't. We are simplifying the process for you so that you can easily get a snapshot of what is going on in MS news.
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Question:
I have a 3 year history of on and off facial drooping. Tingling, twitching, numbness and tremors in my face and in my hand and legs. I get severe tremors in my head, severe fatigue and issues with concentration. I just recently have had an onset of what looks like seizures but I'm fully conscious during them and the EEG didn't show anything. My right leg is now buckling and my leg is dragging. Both legs feel heavy and ache. I have to use a cane to be able to walk and I'm almost needing to use two canes. I've had multiple MRIs, EEGs, evoked potentials test and of course blood work all of which were normal. My neurologist has no idea what I have and I believe that I have MS. My question is does this sound like possible MS or is it really something else? Just FYI I also have hydrocephalus, mixed connective tissue disease, Crohn's Disease and Postural Orthorstatic Tachycardia Syndrome (POTS). Please give me some ideas what to do next. My doctors and I are at a loss and they keep looking at movement disorders which don't seem to fit my symptoms quite right. Answer: I can understand your doctor’s difficulty understanding the cause of your symptoms. The main problem is that your symptoms do not suggest any single diagnosis and I would require further information and a detailed examination to arrive at an opinion. If your symptoms have been present for a long time, then MS is certainly unlikely. It sounds like it may be time for another opinion. I would ask your physicians for a one time referral to another really good general neurologist. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Center Here is My Question: I broke my femur due to osteoporosis. Will this make my MS worse? Will I ever be out of wheel chair and into my walker again? Answer: The fractured femur will not make your MS worse but can diminish your abilities through disuse atrophy or make certain MS symptoms worse such as spasticity and spasms. The loss of mobility from the fracture will also accelerate the osteoporosis, thus increasing your future risk of more fractures. It is very important to discuss the following with your doctors:
The biggest determinant of osteoporosis in people with MS is immobility. Osteoporosis accelerates in people with MS who no longer stand and walk. Studies have shown that wheelchair bound patients can decrease the rate of osteoporosis by using standing frames (CLICK HERE TO READ BLOG ON STANDING FRAMES) to get upright a couple times a day even though they can not walk. Other modifiable risk factors for osteoporosis (things you can eliminate to decrease the rate of osteoporosis) include smoking and chronic steroid use. The sooner you are able to get upright and active again the better, but it must be done safely. This means you will need ongoing physical therapy and may require modifications to your home (ramps or grab bars) to decrease your risk of falls. Good luck Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Question:
My daughter who has MS and is 54, has such anger issues with me. She lashes out for me to stay out of her life, but in her next breath she says she misses not having a mother in her life. How may I learn to deal with this? Perhaps I should see a therapist as she won't go with me to see one...I love her and wish to help her any way I can on her new journey of dealing with MS. Nancy Response: Dear Nancy, Thanks for writing, and sharing this question with us. Since I don’t know you personally, I will offer a general response applicable to all who are experiencing anger on the part of family members who have MS. As you can imagine, it is natural to be angry about having MS, and about living with limitations that the illness often imposes. Anger is the type of emotion that needs to be directed, so we are usually angry at a person. It is difficult to be angry at a thing, like a disease. That’s why many family members of people with MS report that they are the recipients of anger from their relative with MS. The frustration a person with MS feels is sometimes rooted in her inability to protect her family from the impact of the illness – in other words it can be rooted in guilt, or shame. As adults, we so value our independence. When an adult develops MS, she of course wants to remain independent, or as independent as possible. But a person with MS often needs assistance and support in order to maintain independence. She or he may express frustration at needing help, even though there is no doubt that the help is needed. As you point out, Nancy, your daughter seems to want help and reject it at the same time. What can you do if your family member seems angry at you often? As with most life situations, there is no one answer that solves every problem. First, remember that the anger is really not at you, because of you, and is only directed at you. Remembering that can help you respond with more empathy, saying, “I can tell by your anger that you are very frustrated with your MS right now.” That comment expresses empathy and gives the message that you know that your loved one is really not angry with you. It is also reasonable to label the anger and angry behavior as unacceptable. None of us should be used as a pin cushion for the barbs of anger and frustration caused by MS. When doing so, avoid generalizing – don’t use “always,” don’t call names, just refer to the angry behavior, and say you wish to be treated differently. Even though your family member who is struggling with MS refuses to go to counseling, it is certainly worthwhile for family members to pursue counseling for themselves. In fact, your loved one with MS might become curious and interested if you give a brief report about your counseling session, during which you talk about how you can deal with MS more effectively. Rather than try to convince your family member with MS to go to counseling, entice them by providing just a little bit of information, and welcoming them to come with you. One wonderful source of support is a caregiver’s group. Find out if there is a caregiver’s group in your area. Your local chapter of the National MS Society should be able to help you locate such a group. If there is no group in your area, ask the NMSS to help you start one, or see if they can provide an introduction to another caregiver in your area. David Rintell, Ed.D. Psychologist, Partners MS Center, Brigham and Women’s Hospital Partners Pediatric MS Center, Massachusetts General Hospital. Clinical Instructor in Psychiatry, Harvard Medical School One Brookline Place, Suite 225 Boston, MA 02445 Here is My Question:
Could you address the issue of aging with MS. I have seen a few articles about MS slowing or hitting a plateau as we enter our sixties. Answer: At both ends of the age spectrum--newborn and the elderly--our immune systems are relatively weaker when compared to other times in life. This is recognized as common infections, when acquired during the extremes of age, can be life threatening. In the experience of MS, which is an immune system-mediated disease, the hallmarks of inflammation (clinical relapses/attacks and new, enlarging, or contrast-enhancing scars on the MRI) tend to slow down and "plateau". This isn't the case for everyone, but on average, that is what we see. In the event that the inflammatory stage of MS is essentially done (with no evidence of inflammation for several years), there is a good argument that the disease modifying therapies that we currently have (the ones that work on the immune system) are no longer needed. That is a discussion that should happen between the patient and physician at the appropriate time. If a joint decision is made to come off therapy, a strategy should be developed to monitor the disease to ensure that there really is no further inflammation occuring moving forward. Unfortunately, there is a progressive phase to MS where accumulation of physical disability is evident even though there are no signs of inflammation. This is considered the "neurodegenerative" phase of MS. Not everyone goes on to this phase. It is not clear why this happens. It may be that early inflammation (in our younger years) sets the stage for neurodegeneration and progressive disability accumulation, or it may be independent of the inflammatory stage. Much interest and research is focused on this. We eagerly anticipate the development of a treatment strategy that addresses this progressive phase of MS as our current therapies have not proven capable of helping during that stage. A. Scott Nielsen MD Virginia Mason Multiple Sclerosis Center Here is My Question:
Does anyone know what the longest period of time a person has been on Tysabri? Answer: There are MS patients who have been continuously on Tysabri since June 2006 or almost 9 years. There are some former clinical trial patients who have on Tysabri intermittently for almost 15 years. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program #multiplesclerosis #MS #Tysabri Here is My Question: I am a 53 year old female. I am having intermittent numbness, tingling on my face, hands and feet, sometimes it would be right side, sometimes left. Sometimes I would feet heaviness in my arm, then it would go away. It's not sudden but a gradual sensation. I went to the ER twice. My MRI with contrast showed that I have chronic eschemic small vessels changes. They observed me overnight and put me on aspirin. What should I do now, what specialist I need to see? Answer: Great question. We see people like you in clinic every day of the week. Intermittent, multifocal paresthesias (“tingling”) and numbness are a common complaint associated with a long list of diagnostic possibilities. In patients over the age of 50 at onset of symptoms, MS is a less common cause of this symptom. You need to see a neurologist who will take a detailed history and examination followed by a thorough review of your MRI. Ask your primary care doctor for a referral and good luck. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question: Hi there, I wondered if anyone could tell me can I drink alcohol with Tecfidera and in between doses? I am going to a wedding tomorrow and would like to have something to drink at it. Answer: There should no problem with moderate alcohol consumption while taking Tecfidera. Alcohol does not interfere with the metabolism of Tecfidera and, unless you are experiencing gastrointestinal side effects from Tecfidera, moderate alcohol consumption should not create any new problems. People with MS often do not tolerate alcohol as well as they did prior to their diagnosis, so be careful you do not drink too much. It is more important to avoid or minimize alcohol consumption if you take any medications with a sedating effect on the central nervous system; these include narcotics or benzodiazepines (ativan, valium etc) among a long list of medications. Most of these medications can be easily recognized since the bottle or instructions will advise you against driving when under the influence of the medication. If you are receiving this response after the wedding, let me know if need any advice for a hangover :) Have fun. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program #Tecfidera #multiplesclerosis #MS Question:
I have been diagnosed with MS after years of complaints of back pain, etc. and then finally had numbness of my hand and then after numbness of my leg. Both symptoms have subsided now but but how do I know what further symptoms to watch for so I can contact my doctor right away? Answer: All people with MS go through a period of learning about the disease and its management. There is really no rush and you should try to take in small bits of information repeatedly over an extended period of time. I would begin with some of my earlier blogs on this website that discuss establishing a diagnosis of MS, the course of the disease, what to look for and how to interact with your neurologist. Shortly after receiving the diagnosis it is good to have regular visits and contact your MS specialist about any new or worsening symptoms. While these symptoms or problems may not be due to MS, notifying your MS specialist will help both of you in the management of your disease. To directly answer your question, MS can be somewhat unpredictable in that new problems can affect virtually any part of your brain or spinal cord. Despite this variability in MS symptoms, certain symptoms (such as those you’ve already experienced) are very common. Interestingly, recurrences of the disease more often involve the reemergence or worsening of previously experienced symptoms than the development of new symptoms. Good luck and I hope the website helps you with many of your questions Revere Kinkel MD |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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