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Here is My Question:
Can inactive MS skip RRMS and head straight to Progressive MS?? Answer: It is not uncommon for inactive MS to turn into progressive MS with time. Only about 25 % of patients remain stable indefinitely. Remember, only the relapses that occur early in the disease (the first 5 years) are related to the rate of developing progressive disease. Relapses always tend to become less frequent with age and disease duration. After sometimes many years of this apparent stability, it is not uncommon for problems to slowly develop. These problems often involve worsening of your walking ability. Less commonly we see patients who experience an attack earlier in life, often optic neuritis, then remain stable for decades before developing a progressive gait impairment. These patients often do not receive a diagnosis of MS until the later problems develop with walking. Some of my colleagues in Canada call this single attack onset progressive disease. It is our hope that the use of highly active disease modifying therapies early in the course of the disease in well selected patients, will forestall or prevent the development of this progressive disease years later. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Is insomnia a common issue with MS patients? I can't sleep to save my soul at night. Also, how common is bowel incontinence? Seem to have "troubles" at night when I can sleep. Not sure what to do about it? Answer: We written a great deal on insomnia in MS. Please try our search engine (upper right corner of this page) to look for prior blogs and answers to user questions on this issue. Just search for sleep problems or insomnia. This will help you get started on addressing this issue. You will need to have your doctor or a sleep specialist take a good sleep history and possibly do some diagnostic studies to determine the main cause of your insomnia. http://www.healthcarejourney.com/apps/search?q=sleep Bowel incontinence is far less common that urinary incontinence in MS and tends to occur in more disabled patients. You need to see you doctor for a good history and exam that includes a rectal exam. Occasionally, your doctor will need to send you to a gastroenterologist who specializes in gastric motility problems. http://www.healthcarejourney.com/bowel-dysfunction.html Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
How long is it safe to take Tecfidera? Answer: No one knows how long it is safe to take Tecfidera. Even though it has been used to treat psoriasis for several decades, the average duration of treatment in psoriasis patients was less than 2 years. There are now many MS patients who have been on this medication for 3 years. We believe it is safe as long as you do not experience a prolonged reduction of lymphocyte counts but we will need to follow patients for many years to be completely certain. I would remind you that is true of many treatments used in medicine. It takes many years after a medication is approved to determine the long term risks of the therapy. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Is there reason for concern when after stopping Techfidera, in August, because of low absolute lymphocyte count, my count has only rebounded to 560 at the highest. (It started in the 200). And I started Aubagio in Dec. and my count dropped back to 480. Answer: It is well known that absolute lymphocyte counts can remain low for a long time in patients who were previously taking Tecfidera. In my experience this is related to the duration of lymphopenia (low lymphocyte count) before stopping the tecfidera. This may actually help in the treatment of your MS since lymphocytes of different types are involved in the immune process damaging the nervous system in MS. On the other hand this may also may you more susceptible to certain infections or even malignancies in the future. Although Aubagio does not significantly lower lymphocyte counts, it may make it more difficult for lymphocyte counts to be restored to normal levels. Depending on your risk factors for relapses and disease progression, you doctor may want to consider stopping Aubagio until your lymphocyte counts are above 900. 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 currently working for a man with MS and trying to help. He is having a real hard time sleeping at night and is taking medications that are not working and really can't function or focus the next day and is not able to do much like go outside and get sun, think, etc. and is very unhappy. He also has restless leg syndrome and is on a medication for that as well. He is struggling...can you help please? Answer: There are lots of reasons for not sleeping, all of which require different treatments. If we assume his only problem is restless legs syndrome, then he either needs the dose of his current medication adjusted or he needs a different medication. He should discuss this with his doctor. Common additional reasons for not sleeping in MS patients include the following: 1. Leg spasms and nocturnal leg movements 2. Sleep apnea 3. Pain 4. Depression 5. Anxiety 6. Waking up to urinate frequently Good luck with helping him. Have him start by contacting his MS specialist and ask for a visit visit to discuss only his sleep problems. I often find that people with MS do not establish clear goals for their visits and this lack of preparation means the doctor does his or her thing and never gets around to addressing the most important problem. Have him write out the reasons he believes his sleep is disrupted before the visit and have him specifically ask for a visit to address this issue alone. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have been on 5 medications. Avonex, changed due to silent exacerbations, Rebif for 11 yrs, changed due to efficacy no longer working, Tysabri, stop after 2 yrs due to JC virus, Tecfidera, not efficient enough, and Aubagio, stopped due to skin peeling reactions and high blood pressure. Even though my MRI's may show no new lesions, I am losing my balance, and my vision is deteriorating from constant optic neuritis. I want to try the new medication Lemtrada, because I did the absolute best on Tysabri and I seem to do better on IV medications. However, my neurologist says that I am not sick enough and refuses and says other neurologists will refuse also. Now, I am currently on no medication because the one the neurologist backs (Copaxone) takes 9 months to get into the system and I want a medication that slows down all symptoms not just the lesions on the brain. Is this true about no neurologist prescribing Lemtrada? How can I get this new medication prescribed to me? Answer: First of all it sounds like you have secondary progressive MS, since you describe progressive worsening problems with balance and vision in the absence of relapses or new lesions on MRI. You may be in the early stages of SPMS, but I can not determine this from your description. There is no evidence that Copaxone is beneficial at this stage of disease and this option would not be appropriate. Tysabri was not beneficial in a recent secondary progressive trial, although people in the early stages often benefit from Tysabri. Lemtrada (alemtuzumba) was not helpful to people with secondary progressive MS but similar to Tysabri may be beneficial in early SPMS patients who continue to experience inflammatory activity (relapses or new MRI lesions in the past year or two at most). Based on the information provided, the best choice right now would be Rituximab (especially if you are under age 55), but this is often not authorized by insurance as a treatment for MS patients. The second best choice is to restart Tysabri, since you know you responded and tolerated this treatment in the past, and switch to Ocrelizumab when this is approved by the FDA, hopefully by the end of 2016. The risk of PML is only significant after 24 months of re-treatment with Tysabri even in patients who are JC virus positive and you would be switching to Ocrelizumab before that amount of time on treatment. Your risk of PML is particularly low if your JCV antibody index in less than 1.5. To determine if Lemtrada is a reasonable option would require me to gather a lot more information about your condition. As mentioned above Lemtrada was not beneficial in prior secondary progressive clinical trials and there are short and long term risks associated with this treatment. Discuss these options with your MS specialist. Good Luck 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. Question: How does Lemtrada work? In your opinion is it safe?
Answer: Mechanism of Action: Alemtuzumab (Lemtrada) is a monoclonal antibody directed against CD52, a protein expressed at high levels by both mature circulating B and T lymphocytes and at lower levels on circulating monocytes, macrophages and eosinophils. There is little expression of CD52 on mature natural killer (NK) cells, neutrophils and haematological stem cells. Following treatment there is a rapid and sustained reduction in circulating lymphocytes with a return of the B cell population within 6 months and a more sustained depletion of circulating T cells for more than 12 months. This selective reduction in lymphocytes is presumably the mechanism of action of this treatment in MS. Lymphocytes are the driving force behind all adaptive immune responses and are implicated in the pathogenesis, propagation and maintenance of central nervous system inflammation and tissue injury in multiple sclerosis. Other disease modifying therapies (DMTs) that specifically target lymphocytes include Rituximab, a monoclonal against a protein called CD20 on the surface of only mature B lymphocytes and Natalizumab (Tysabri), a monoclonal antibody that binds to alpha 4 integrin, a protein on the surface of lymphocytes and mononuclear cells required for circulated blood cells to bind to the lining of small blood vessels in the brain and cross the blood brain barrier into the tissue. Following treatment with Alemtuzumab, there is less depletion of lymphocytes residing in lymphoid organs (lymph nodes and spleen) and preservation of neutrophils and bone marrow derived stem cells. The selective reduction in circulating lymphocytes and preserved neutrophils is the reason that few treated patients experience severe infections following treatment. The more rapid return of B lymphocytes compared to T lymphocytes following treatment with Alemtuzumab has been implicated as the reason for the high incidence of system autoimmune disease following treatment. It is speculated that autoimmunity occurs as a result of B cell and plasma cell responses in the absence of normal T cell regulation. Most of the autoimmune diseases following treatment with alemtuzumab involve the thyroid gland. Less commonly autoimmunity can target blood platelets causing a reduction in platelet counts and a high risk of bleeding (called idiopathic thrombocytopenic purpura or ITP for short) orvery rarely an autoimmune disease of the kidneys develops (called Glomerulonephritis). You can also enter "Lemtrada" in the search button on the upper right corner of this page to read more about Lemtrada. http://www.healthcarejourney.com/q--a-for-virtual-ms-center/what-long-term-data-is-there-on-lemtrada Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How long can a relapse last for...days, weeks, months? Answer: 80% of people reach maximal deficits from a relapse in 2 weeks and 90% within 4 weeks. This is followed by a variable period of stability, usually a few days to 2 weeks, followed by slow improvement to a new baseline state with or without residual problems from the relapse. 80% of people reach maximum recovery within 3 months and 90% within 6 months. The rest can take up to a year to recover, although we now know that recovery can continue beyond a year if the underlying disease is thoroughly controlled. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How does foot drop start? My left foot at the ankle feels weak and uncomfortable to walk on. I can walk straight no issues. Answer: A foot drop is an inability to dorsiflex the foot (move upward at the ankle joint). The first symptom noticed is catching the toe or foot on the ground while bringing the leg forward during your normal stride. If more severe, a person with a foot drop walks with a high step gait during the forward swing phase to allow the foot to clear the ground. Others may notice that the foot makes a loud slapping noise when it hits the ground. If a foot drop is caused by a central nervous system problem, there may be a spastic or dystonic turning in of the foot while walking. This may create a sense of instability or discomfort at the ankle joint since the foot can roll over during normal walking. You can read more about foot drop on our symptom page for it...READ MORE Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been on Copaxone 20mg for 14 years and I have never had a problem until they switched me to Glatopa 7 months ago and I am now having balance problems and walking problems and for the first time. People are asking if I'm ok as I am now showing MS symptoms I am just wondering if it can be because of switching me to the generic. Answer: The first thing to do is make sure that your balance problems are related to MS, since there are many possible reasons for impaired balance If your MS specialist feels certain that this problem is a result of your MS, then I would think through your problem in the following way: The FDA determined that Glatopa is equivalent to Copaxone. The most reasonable explanation for your worsening symptoms, therefore, is the natural history of MS in an era of partially effective treatments that reduce relapses only. Let me explain: Treated MS patients frequently go through 3 phases of their disease. The first phase consists of relatively frequent relapses (perhaps 2 or more in the first 3 years) before starting on treatment. While people with MS sometimes experience an occasional relapse early after the onset of treatment (first 6-12 months) once an effective treatment is started they often experience very few relapses and may go many years with apparent stability; This is the second phase of your disease. I refer to this stable period as only “apparent”, because we can often detect changes over time using quantitative measures of brain volume on MRI scans. Even if your doctor is obtaining regular MRI scans the radiologist will not detect these changes in brain volume, and usually will report your MRI as stable because no apparent new lesions are developing. The third phase of the disease begins 10 or more years after the onset of treatment and after this second period of apparent stability. This is simply the secondary progressive phase of MS. The real question is what to do about your current problem. I would recommend a repeat MRI of the brain with and without gadolinium to determine if there is any new inflammatory disease activity (new or enlarging T2 lesions or enhancing lesions since a scan within a year). If this is the case I would consider treatment with IV high dose steroids followed by a switch to a more highly active disease modifying therapy (DMT). These highly active treatments include Tysabri, Rituximab and Alemtuzamab. The choice of DMT will depend on many factors including the degree of inflammatory disease activity, your risk factors for disease worsening, your aversion to risk and your co-morbid medical conditions. If there is no significant inflammatory disease activity, go ahead with the high dose IV steroids and determine the amount of improvement and the length of improvement. If your improvement lasts for over 6 weeks, you may consider continuing on regular 3 to 5 days courses of IV high dose steroids (no prednisone taper) every 2 months without the Glatopa. If Rituximab is available to you now (this varies by insurance), this may be a good choice as well. If rituximab is not available, your doctors may consider Ocrelizumab once it is approved by the FDA. If your balance is off you should also talk to your doctor about working with a physical therapist and using a cane or rollator type walker to prevent falls. 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 67 and in July and August I was in the hospital because I had an aneurysm. I also have MS. I was told by doctors at the hospital that it could not have been caused by my MS. Is this true? Also, I was told by one doctor, this could NEVER happen again. Then, I told him my mother had an aneurysm and then he said "well, now that I know your history" but never said anything else. After I left, I wondered "why" he said that. I would really appreciate your opinion. I certainly pray that never happens again, since I know I am very lucky to be sitting here. Would I benefit from Having an MRI yearly? Thank you so much! Answer: There is no relationship between the development of intracerebral aneurysms and Multiple Sclerosis. Aneurysms are usually found incidentally in Multiple Sclerosis patients during a routine MRI scan. An aneurysm must be a certain size before it is typically visible on a routine MRI scan, since MR angiograms are not part of our routine MRI evaluation for MS. When you say you “had” an aneurysm last August during a hospitalization, I assume this means it was either clipped during a surgical procedure or a coil was placed in the aneurysm during an interventional cerebral angiogram. If this is the case, the aneurysm should not return. It is also unlikely that new aneurysms will develop at your age. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Hi my question is regarding MRI reports. I have seen the term "volume loss in the brain" multiple times when obtaining a copy of the MRI report, but my doctor has never mentioned this as an issue to me. Should I be concerned? Answer: The term, “volume loss”, on an MRI report is usually accompanied by the phrase, “greater than expected for age.” As you may know, we gradually lose brain tissue volume as part of the normal aging process. Certain diseases of the nervous system, such as MS, accelerate this volume loss. Even in the most benign cases of MS, we usually notice greater volume loss than expected for age after years of disease. Few neurologists pay attention to this volume loss for several reasons: 1. Until recently there was no way to accurately measure this brain volume loss except in research studies or even determine if the amount of volume loss per interval of time (say a year) was greater than expected. Soon these techniques will be available in clinical practice. 2. We know of no therapies that halt this volume loss, although certain highly active therapies such as alemtuzumab (Lemtrada) and ocrelizumab (not available yet) slow down this loss of volume to near normal rates. 3. Most MS therapies are approved based on clinical trials that used relapse rates and the development of new T2 hyperintensities (the white spots on MRI) as the chief outcome measures. Therefore, most neurologists in clinical practice primarily use these outcome measures to determine if a drug is working. Studies over the past 25 years have demonstrated that the brain is able to compensate for loss of brain tissue, in individuals with significant passive and active neuronal reserve (see prior blogs on this subject). Briefly, passive reserve refers to the amount of enrichment and education you receive during development and active reserve refers to ongoing mental and physical stimulation and learning through adulthood and old age. Therefore, the mere presence of volume loss should not concern you now. Continued volume loss, on the other hand, at rates greater than expected is associated with the development of both cognitive and physical disability. Therefore, it is increasingly important to measure this MRI metric to determine if your treatment is working adequately. This is particularly important in people who are over 50 or with longstanding MS, since they rarely have relapses or noticeable new MRI T2 lesions even when a treatment is not working adequately. In these individuals it is perhaps not accurate to say that everything is stable merely because these measure remain stable. Stay tuned for more information on this important topic. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Can MS start late in life? I am experiencing hand dexterity issues. Answer: MS can certainly start late in life, although this is uncommon. Problems with hand dexterity in the elderly or even middle aged adult can be caused by a multitude of different problems. I am not sure why you are concerned about MS, based on the information provided, but a good neurologist should be able to figure out the reason for your problem. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
What are the signs of PML? Answer: PML causes subacutely progressively (developing over weeks) neurological symptoms and findings that can be quite similar to an MS relapse. Some common symptoms of PML that are less often observed in MS included large visual field deficits and language deficits. PML does not create spinal cord problems so a “relapse” confined to the spinal cord (which is common in MS) is unlikely to be caused by PML. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
When you test for MS and then first MRI is normal and then a year later it is still normal, when should you do another MRI? I'm continuing to have symptoms such as stiffness, fatigue, eye pain, numbness and tingling. Answer: The answer to your question really depends on the likelihood that you have MS. For instance, if you experienced a clinically isolated syndrome (optic neuritis is an example) and your MRI is normal at onset your chance of developing MS over the next 10 years is less than 20 %. Repeating an MRI scan one year later is reasonable but if the repeat scan is normal, I would wait another 2 years before scanning again. Of course, if definite new symptoms consistent with MS occur during this follow-up interval, I would repeat the MRI earlier. People with signs and symptoms that are less specific for MS (examples include fatigue, stiffness, tingling without exam findings) do not require multiple repeated MRI scans; repeating an MRI one year later is probably sufficient unless definite symptoms and signs of MS appear. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question: How much Melatonin can be safely taken at night? Answer: Melatonin is not regulated by the FDA even though it is a hormone. There are potential side effects but usually with doses much higher than those readily available. Studies suggest that melatonin is NOT a good sleeping pill compared to any of the available sleeping pills on the market. There are studies indicating that melatonin is useful for resetting your circadian rhythm to restore normal sleep patterns. This is typically a problem with shift work, jet lag or people who have either accidentally or on purpose reset their biological clock and no longer are able to go to bed at the usual time. For people with normal sleep patterns, the pineal gland begins secreting melatonin at around 9 pm and this progressively make you more sleepy. Therefore, most of us recommend 3 mg of Melatonin at 9 pm in order to go to sleep by 11 pm. Once your circadian rhythm is reset Melatonin will have no further affect and should not be needed anymore. MS patients have lots of reasons for disrupted sleep, all of which require different treatments. To know how to treat these different sleep problems requires an adequate history and sometimes additional testing. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #melatonin Here is My Question:
How often do neurologists disagree with radiology reports? Do you recommend second opinion readings of MRIs and how would I go about getting a second reading of MRIs? Thank you. Answer: We disagree often with general radiologists (they read the majority of MRI scans in the country) and less often with neuroradiologists (most radiologists at academic centers are specialized in MRI of the nervous system and are called neuroradiologists). If your physician would like a second opinion about your MRI, he can send us a message. You would then need to get a copy of your MRI on CD and upload the MRI to our site. We provide the report to your physician. This service is available for $50 and not reimbursed by insurance. If you are interested, send us an email at admin@healthcarejourney.com Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How long do Plegridy side effects last? I have just started the treatment and feel grim it has exacerbated all my current symptoms and added more to the mix. Can anyone who has been on it advise please. I was on Copaxone for years with no side effects but was having problems with injection sites. Tried Tecfidera but that was horrendous on the side effects. I am worried I have made my situation worse. I know MS is not black and white but am struggling to know if I have made the correct decision. It also troubles me that there are I am told only a very few people on it in my area so a small pool of knowledge. Any help would be greatly appreciated 😃 Answer: Plegridy is like any other interferon treatment and associated with the well known 'flu like' side effects. These usually consist of muscle aches, malaise (basically fatigue), fever and headaches. These symptoms from immune activation can transiently worsen some of your MS symptoms. Plegridy is also a subcutaneous injection that can create delayed injection site reactions developing over 1 to 4 days. Of course, the benefits of Plegridy include the sustained action over more than 2 weeks and the reduced injection interval ( every 2 weeks). If you are not able to control the flu like side effects with ibuprofen (600 to 800 mg) three times a day or naprosyn 440 mg twice a day (2 Aleve tablets) beginning the day of injection and continuing for 4 days then switching to prednisone 10 mg twice a day (first dose before the injection) for 3 days usually does the trick and is well tolerated. You would need a prescription from your doctor for prednisone. If any of these medications upset your stomach, take them with food and Pepcid (famotidine) 20 mg twice a day. Usually the side effects from Plegridy lessen significantly within 3 months of starting treatment. If you follow these suggestions and still experience unacceptable side effects after 2-3 months you should consider an alternative treatment. The alternative recommended by your MS specialist will depend on your risk factors, age, co-morbid conditions and lifestyle. Oral medications like Aubagio and Gilenya are very well tolerated and effective. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #Plegridy #sideeffects #multiplesclerosis Question:
How safe is it to have contrast with MRI?. After my first attack I had 2 brain and spine MRIs. All were negative but I still had symptoms and then a year later I had a neg MRI. In April it will be more MRIs with contrast? I am worried they have no idea what I have but with yearly MRI with contrast I am worried how safe this is. Answer: This is a very good question. Please refer to my posting from 9/17/15 for the most up to date information on this subject. I think it is best to minimize the use of gadolinium when possible. This can be done once a diagnosis is established by using volumetric imaging with registration of images to simply determine if white spots (T2 lesions) are new or enlarged since the last MRI scan. If these techniques are not used it is difficulty to determine new activity on MR imaging. http://www.healthcarejourney.com/q--a-for-virtual-ms-center/are-gadolinium-contrast-agents-safe Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego |
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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