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Here is My Question:
I have suddenly developed left jaw pain for the last 10-14 days. It is actually right in the joint of my jaw. No tooth pain or pain anywhere else in my jaw. Now I woke up this morning with pain in the right back of my neck. It & my jaw have hurt severely all day. It feels like a lymph node on back of neck and also left node behind my ear seems swollen but not sore like my neck. I am taking Tecfidera x 3 months. I do not have a fever although I feel like I do. Should I stop the Tecfidera ? Do I call my neurologist tomorrow? or regular doctor ? or dentist? I feel really sick and my left jaw & right back of neck or horribly painful. What do I do now? Dx'd with MS July 2015 :( Thank you so much...very scared. Reita Answer: Call your neurologist ASAP for guidance on Tecfidera. It is ok to hold the Tecfidera temporarily. If you develop a fever, consider evaluation in urgent care or your PCP. As always, urgent concerns should be addressed by your doctors over the phone or in their office. I hope you feel better soon. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Dear Reita, The HealthCare Journey Team would like to sincerely apologize. Your question came in to us on November 12th and Dr. Nielsen answered it that day...but somehow the email got looked over and we didn't post the answer. We are so sorry! Here is My Question:
Is an exacerbation of MS the presentation of Th1 or Th2? Answer: The Th1 and Th2 you are referring to reflect T-helper cells (1 and 2) which are types of white blood cells that help fight off infections among other roles. Th1 cells are primarily involved in cell-mediated immunity (ie, dealing with viruses, etc) while Th2 cells are involved in humorally-mediated immunity (ie, producing antibodies against bacteria, etc). This is a gross over-simplification as both are involved in immunity; however, the Th1 and Th2 responses appear to keep each other "in check" so one does not dominate the other (a "checks and balances" approach if you will). In general terms, Th1 responses are considered "pro-inflammatory" while Th2 responses are considered "anti-inflammatory". When these cell types are invoked as part of the conversation in MS,we are typically speaking about the "cytokines" (or chemical signals) that these cell types make to communicate with one another in the immune reaction. The relative abundance (or lack thereof) in a patient can give us an idea about the state of the immune system in that person. For instance, if a relative abundance of pro-inflammatory cytokines are discovered in the blood, this likely represents a state of immune activation to fight off a foreign entity (ie, bacteria, virus, or even a rogue cancer cell). In multiple sclerosis, it is not entirely clear what sets this off, but the end-product of the inflammation damages myelin and surrounding tissue in the brain and spinal cord. In multiple sclerosis, the cytokine profile tends to be skewed towards the Th1 response (or more inflammatory) even at rest/baseline. In the case of an MS attack, the net cytokine profile seems to reflect a Th1 response. Once again, this is an oversimplification, and both Th1 and Th2 responses are involved. Much of our approved disease modifying therapies target various stages of the Th1 response for the patient's benefit. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Using steroids everyday is not good I have been told. I am now taking 40 mg for a short course of prednison and I feel great. More energy,less pain. My MS is classified as stable but this is the second time I am doing a short course. August this year and at the moment, after moving to a new house. My last MRI was in January. Can you take steroids everyday??? Answer: Some of the worst side effects we see in medicine occur as a result of taking steroids every day for prolonged periods of time. On the other hand, very high doses given for up to 7 days or short periodic oral courses for up to 3 weeks are relatively safe. When we must - and I emphasize the word MUST- continue steroids for long periods of time, we try to dose them every other day to minimize the cumulative side effects. We have known for a long time (at least 50 years) that people with MS often feel remarkable better when they take steroids. Years ago doctors were persuaded to continue steroids in these patients often with horrific side effects and problems emerging over time. This practice disappeared in the late 1980s. You would be wise to avoid continuous use of steroids. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
If your MS is described as inactive or stable does this mean no DMT medicine for you? Wouldn't these medicines prevent further symptoms? I know my neurologist cannot describe DMT's if he describes my MS as stable. What is your advice? I was diagnosed in 2012 in January and no relapses since, just mild symptoms flaring up. Thank you in advance. Answer: The terms "active or stable" are usually in reference to the prior year and have nothing to do with an individual’s eligibility for disease modifying therapy (DMT). Active MS means the individual experienced either a relapse or new or enlarging MRI lesions in the prior year. The longer a person with relapsing remitting MS is stable (without relapses or MRI activity) off of a DMT, the less likely a DMT is that important to start. However, we are talking about intervals in excess of 3 years of stability not 1 or 2 years. It is also important to remember that people with progressive MS often get worse over time without experiencing relapses or MRI activity. These individuals tend not to respond well to DMTs if several years go by with continued worsening despite an absence of “activity". Hope this helps Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
How accurate is an MRI when diagnosing MS? Do lesions show up right away or is it years before it shows as a demyelination disease? Answer: Let answer each question separately: 1. How accurate is MRI in the diagnosis of MS? MS remains a clinical diagnosis. MRIs are used to assist in the diagnosis. This means that there is NO MRI appearance that is capable of defining a definite diagnosis of MS in the absence of clinical symptoms and findings that support this diagnosis. Therefore, the accuracy of MRI in the diagnosis of MS is dependent upon two variables; the interpretation of the person reading the MRI scan and the interpretation of the individual obtaining the history and doing the examination. These two variables are primarily responsible for diagnostic error. Specifically, a person misinterprets the MRI findings or the clinically presentation or both as consistent with MS. 2. Do lesions show up right away? The simple answer is yes. The problem is that the MRI may not be of good technical quality or the abnormality may involve a part of the brain that is not easy to visualize on standard MRI 3. Do Lesions show years before a diagnosis of demyelinating disease? The answer is yes in many individuals. This is why an average person with MS will have up to 8 visible lesions on their MRI scan that are inactive at the time that they present with their first symptom of MS Hope this helps. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Do lesions ever go away? Answer: Here is a previously written blog regarding this topic: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/mri-results-in-ms-how-to-interpret-them Here is My Question:
So I have been somewhat diagnosed with MS (not sure how severe as of yet) there are lesions noticeable however I have had to lumbar punctures and the fluid has come back negative. The Dr. has started me on Copaxone (Glatopa) 20 mg. Just wondering if there is any reason I shouldn't drink alcohol? Chris Answer: There is no problem with drinking alcohol in moderation. As for starting Glatopa, what is the goal of this treatment? This may seem like a silly question, but if your doctor is not even sure of the diagnosis why is it being prescribed? Were you given the option of monitoring your condition with regular MR imaging to determine: a) Do you have MS?; b) How active is your MS?; and c) Does it require treatment? While I do not know the details of your case, these are the questions that all patients must ask before initiating treatment since day to day symptoms are not likely to abate on treatment with Glatopa. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I've been on Tysabri for 4 years and have been JC+ since the beginning. Tysabri isn't working any more and I've been put on Aubagio to see if it will work and to qualify it for my 2nd drug to qualify for insurance coverage for Lemtrada. So far I've had severe headaches and diarrhea. I'm on my first month and do not want to take this drug anymore. I just want to stop taking it, I'm in my 70's and just can't handle these side effects. I use a walker and a service dog. Can I just stop taking it? I can't even get a date scheduled for Lemtrada until mid next year and Medicare doesn't pay for injections and pills. I was given this month's supply of Aubagio but next month would cost me $3700 as my copay.. I can't handle that and foundations have run out of funds but I already hate this drug mid-month. Can you advise me? Answer: No one should have to suffer through significant and persistent side effects unless the long term benefits are worth it and the side effects are likely to abate. From your description, it appears the side effects from Aubagio have only worsened over the first month. The best option is to discontinue Aubagio until you feel better and then restart at the 7 mg dose. It may take several months before your doctor is able to get you back to the 14 mg dose but this is usually achievable. Tell your doctor you want to be prepared for any return of side effects the second time around so a management strategy for recurrent headaches and diarrhea is worked out before the problem re-emerges Most people in their 70’s have either progressive MS (>70 %) or long standing benign MS (< 30 %). People with MS in either group are not typically ideal candidates for Lemtrada (Alemtuzumab) unless there is significant evidence of ongoing disease “activity.” In this case “activity” is defined as severe relapses in the absence of infection or continued new enhancing lesions on MRI in the past 6 to 12 months. Most people in their 70’s rarely experience frequent relapses or continued MRI activity and their presence may suggest another problem activating the MS. Discuss these issues with your MS specialist as he or she is the only one who knows the details of your case. Sometimes an extra opinion from another MS specialist is helpful. It is important for you to understand your risks of further activity and progression and the goals of treatment before you make any decision. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego  Tad Campbell, MCN, RD, LD is a registered dietitian in Dallas, Texas. He currently works with Multiple Sclerosis patients at the University of Texas Southwestern Medical Center’s Total Life Care (TLC) MS clinic. In addition to his clinical role, Mr. Campbell also serves as the Education Coordinator for the Clinical Nutrition department in UT Southwestern’s School of Health Professions teaching Food Science and Technology and working with potential, new, and existing students who are interested in beginning a career in nutrition and dietetics.
Mr. Campbell was a faculty speaker at the 2013 Consortium of Multiple Sclerosis Centers conference where he presented “A Global Approach to the At-Risk MS Patient - Role of the Dietitian” along with his colleagues from the TLC clinic. Please welcome Tad Campbell to HealthCare Journey! Question:
What are some treatments for MS? Answer: We have a page with quite a lot of information about MS treatments HERE Question:
What is the recovery time from first injections of Lemtrada? When can I go back to work? I've taken Aubagio - lost my hair, Tecfidera sick in beginning then flushed bad for a year took injection of Tysabri (which I liked) but because of JC low positive, doctor wants me to go to Lemtrada. My main MS symptom is walking. I can deal with other stuff. If drug won't help that; I don't want to do more damage. What's your view? Thanks Dawn in Hawaii Answer: Tysabri remains an option if your JC virus index is less than 1.0 . Remember, you are comparing the risks on Lemtrada, which are considerable, with the relatively low risk of PML in low titer patients. This is not to say that Lemtrada is not the best treatment for you at this time. I just want you to understand that the relative risks are comparable in your circumstances. That being said, most people tolerate Lemtrada very well with a prompt recovery after the 5 days of infusions. Some report malaise and low energy (flu like) during the month after infusions but most people return to their usual activities promptly. Most of the side effects from Lemtrada occur during the five days of infusions and I would not schedule any activities during this time period. How you do after the infusions really depends on your baseline symptoms and level of function. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #Lemtrada Here is My Question:
Hi- Looking for advice on how to proceed. Symptoms for years that were initially attributed to "other things" then left thumb went numb which triggered a doctor visit. Year down the road and still being passed off from one specialty to the next and watched by neuro. Besides fatigue, which is constant all symptoms are intermittent. CT 1 year ago. EMG when left thumb was numb an that was normal. Evoked potentials auditory and visual this year normal. Brain MRI 1 yr ago, non specific white matter lesions differential of migraine, vasculitis or demylenating disease. Spine MRI clear. New MRI 1 week ago. Again non specific white matter lesions "mostly in frontal lobes" increased in number. Same differential. Also had MRA which was normal. My ANA is negative, my ANCA is negative, all blood work is normal besides High cardiolipin and beta 2 immunogloulin but no embolisms, thrombosis etc. Symptoms included numbness in thumb x 3 months (resolved) right food 2 mod (resolved), intermittent numb/tingling mostly fingers sometimes feet, vertigo, left eyelid twitching, Raynauds, spatial issues, see floaters in shower/when hot, personality changes when hot (extremely irritable), off balance when hot, idiopathic allergic reactions, joint pain (constant left thumb since June), intermittent knees, muscle pain (times when back/neck muscles are so tight nothing helps including massage and chiropractic and meds, high NSAIDS), choking when drinking (on and off for years), then this month choked x 2 when eating. More but to keep it condensed….Should I go along with the watch and wait theory or do I push for a more aggressive plan? Help. Answer: WIthout knowing more about you, I would have to agree with the "watch and wait" approach with aggressive symptom management. Remember, we often don’t require a diagnosis to manage symptoms. Spinal fluid analysis is very useful in cases like yours; the vast majority of people who have or will develop MS, have spinal fluid abnormalities that persist all the time regardless of the activity of the disease. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is my question:
I am a 54 year old female. I have MS and was diagnosed 19 years ago with no optic neuritis. Am I a good candidate for lasik eye surgery? I have glasses 1.75 diopter for far seeing. Thank you, Rosie Dear Rosie, Your diagnosis of MS should have no effect on your ability to have LASIK surgery. If your refract error is only 1.75 diopter than you probably are a very good candidate for LASIK; however you will need to discuss that further with an ophthalmologist who specializes in LASIK surgery. Sincerely, Benjamin Osborne, MD Associate Professor Department of Neurology and Opthalmology Georgetown University Hospital Question:
I switched from Tysabri to Tecfidera 18 months ago. Had a 2-month wash-out from Tysabri, then cortisone one a month for 3 months. Started Tecfidera after the 2-months wash-out. 2 wks 140 then full dose. Starting experiencing severe lymphopenia at month 6. Now at month 16 dropped down to 586. Should I stop Tecfidera considering my average lympho count has been 600 for 13 months. I was offered Aubagio but I'm fearing hepatic problems (had hepatic problems leading to stop Gylenia) and hair loss. How long is the recommended wash-out ? Thank you. Marie Answer: I’ll handle each of your questions separately since they are not related: 1. How long is the recommended wash out on Tysabri? There is no recommended wash out period. I prefer to start patients on an alternative Disease modifying therapy (DMT) as soon as possible to avoid a relapse during the Tysabri withdrawal period which is common in the first 6 months after stopping Tysabri. It often takes time for DMTs to become fully effective and the longer you wait to start a new DMT, the higher the likelihood you will experience a relapse. You would not start another DMT immediately after stopping tysabri, if there is any concern you could have either symptomatic or presymptomatic PML. This is why we always obtain a repeat MRI of the brain before starting a new DMT and then repeat the MRI 3 months later. 2. How do you know when you to stop Tecfidera because of a low lymphocyte count? This is an area of controversy right now. All agree that persistent (a few months) Lymphocyte counts below 500 should prompt you to stop treatment. I personally recommend stopping Tecfidera with lymphocyte counts below 600 lasting for more than 3 months. Since Lymphocyte counts tend to remain low or drop further, especially in people over 55, I tend to halt treatment, at least temporarily, in patients with lymphocyte counts between 600 and 800 with large drops in CD8 counts (a type of lymphocyte subset), if persistent for more than 6 months. The concern is that lymphocyte counts may fail to recovery if they persist too long. Discuss your concerns with your MS specialist and the options available to you. Only your MS specialist knows enough about the details of your illness to assist you with treatment decisions. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego PLEASE NOTE: The information/opinions on this site should be used as an information resource 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. #Tecfidera #Tysabri ,Here is My Question:
Hi I'm a 25 year old female and I had experienced numbness in my face then months later numbness in my feet and legs. I have had weakness in my arms on ovation and joint pains for years. I've had 2 brain MRIs that show growing brain lesions and I had a spine MRI that showed hyperintense focus in the thoracic cord. I have also had some other health issues but I don't know what is relevant at this point. I don't have the greatest luck and I am very clumsy and tend to get hurt a lot. In the last 2 years I've sprained the same ankle 3 times. I also have noticed I have slurred speech and some difficulty saying what I want to say. I have an appointment with a neurologist but I'm hoping for a few answers. Thank you in advance, Kelly Answer: I’m sorry to hear of your neurologic difficulties and the testing that is showing abnormal results. While multiple sclerosis can present in this way, it is important to make sure that there isn’t something else going on that could be mimicking the disease. The fact that you are having joint pains may be a relevant symptom that should trigger your neurologist to rule some other things out (such as autoimmune arthritis, etc). I would also recommend that you meet with an MS specialist to help in the diagnostic process. Please take a look at the links on this webpage that helps explain the diagnosis of multiple sclerosis: http://www.healthcarejourney.com/diagnosis.html. A. Scott Nielsen MD MMSc Neurologist at MS Specialist at Kaiser Permanente
Here is My Question:
I want to ignore this disease. I don't want to take any medications. I just want it to go away but it isn't and my family keeps after me to take medication. I have heard that some people with MS never get really bad so I'm hoping I'll be one of them. Can't I wait and see how I do instead of taking medications? Please refer to my past blog which addresses this topic: http://www.healthcarejourney.com/physician-blog/a-commonly-asked-question-about-disease-modifying-therapies-for-multiple-sclerosis A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Question:
I've been starting to exercise more but every time I do I end up getting overheated! What are some ways that I can exercise other than moving to Alaska?? Answer: Heat sensitivity with MS can be frustrating. Between 60 and 80% of people with Multiple Sclerosis are sensitive to environmental heat. Heat sensitivity is caused by plaques on nerves where demyelination has taken place. These plaques slow the ability of the nerves to function, and heat further slows down nerve impulse transmission in demyelinated regions. We have a whole list of strategies/ways to help you manage it on our symptom page for heat sensitivity READ MORE so you don't have to move to Alaska :) |
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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