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Welcome to the Virtual MS Center!Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible
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Here is My Question:
I'd like your opinion about the findings from my latest MRI. These are from the radiologist at the hospital, not my neurologist. I'd like to know how concerned I should be about the level of atrophy (I am a 52 yr old female) and whether I can interpret the note about imaging stability to indicate that my DMT (Ocrevus, started 2 yrs ago, about 9 months post diagnosis) is working. Also, does the location of the subtle T2 signal indicate what functions might be / become impaired? Here are the findings: FINDINGS: The brain is mildly atrophic. There is no diffusion abnormality indicative of no acute ischemic infarct. Redemonstrated is subtle asymmetric hyperintense T2-FLAIR signal in the periventricular white matter of the left frontal lobe. There is no new signal abnormality. There is no evidence of acute or chronic extravascular blood products. There is no mass and no mass effect. Corpus callosum and pituitary gland have a normal appearance. Following gadolinium administration, there are no areas of abnormal enhancement. There is no cerebellar tonsillar ectopia with the craniovertebral junction normal. Orbital structures are unremarkable. Paranasal sinuses and mastoid air cells are clear. IMPRESSION: MR imaging of the brain shows no acute neuroimaging finding with imaging stability when compared to the exam 26 months ago. Answer: It is hard to provide an opinion about an MRI based on a radiologists report. I can however provide some explanations 1. The radiologist could see no changes since the last scan 26 months ago. This is a qualitative judgement and generally means there has not been a big enough change for the eye to perceive. 2. The comment about mild atrophy is meaningless without quantitative measurement; mild compared to what? 3. The report does not provide enough information about the location of “lesions” to make any comment regarding associated symptoms. Generally speaking there is little if any relationship between the location of “lesions” in the cerebrum (main part of the brain) and symptoms or exam findings I would emphasize the lack of change over 26 months as good news. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director 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.
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Here is my question:
Can I take Ocrevus without steroid administration? Answer: That is a personalized decision with each clinician based on a person's experience with the drug and location of drug infusion. While this can be done, there can be risks of infusion reactions. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Strategic Initiatives Cain Denius Scholar of Mobility Disorders Distinguished Teaching Professor Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Medical Center Dallas, Texas Hi to those who have utilized RadConnect on our website to store their MRI images. Please note this message we have received from them below:
Dear RadConnect Customer, NucleusHealth is excited to announce that we have a new image exchange service for you called Nucleus.io! By upgrading from RadConnect you will benefit from a new user-friendly interface, sleek new look, and improved connectivity. We have two options for Patients to move their images from RadConnect to Nucleus.io. You will need to take action before March 31, 2019 as RadConnect will no longer be in service after that date. All of our Organizations and Professionals will be moved and sharing studies to patients solely from Nucleus.io. OPTION 1 Manual Account Migration You can manually download your exams from RadConnect at your earliest convenience and wait to create a Nucleus.io account and upload your exams there on April 1st.
OPTION 2 Automated Migration Service Our team will create a Nucleus.ioPatient Account for you and transfer all of your existing exams from RadConnect to your new Nucleus.io account for a fee of $20.00.
Please submit the Migration Form and Payment by March 15, 2019. Effective March 31, 2019 at 11:59pm PST RadConnect will no longer be in service or accessible. Please review our Frequently Asked Questions for further information. Thank you for your attention and understanding, we look forward to continue serving your medical imaging needs. - NucleusHealth Team View this email in your browser Copyright © 2019 NucleusHealth, LLC. All Rights Reserved. Here is My Question:
Why do I have days when I'm so sad and cry so much? Is it the MS or the glatopa injections? Before MS I never had this problem even during the worst days in my life. I never cried and always had control. I'm 57 and am still working and in good health. Answer: Feeling sad and not being able to control certain emotional expressions such as crying, laughing or smiling are not necessarily related in people with MS. It is definitely important to first determine if these symptoms are a sign of depression. Even if your description of sadness is felt to be a symptom of depression, you could still be having difficulty controlling the ‘release’ of your emotions because of areas of the brain affected by MS. All of these symptoms are amenable to treatment, so talk to your MS specialist. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Can I switch back to Tysabri from Ocrevus? After 4+ years on Tysabri I became JCV+ with a high titer #. For the last year and a half, while on Ocrevus, my symptoms have been continuously up, without relapse. Definitely felt better when on Tysabri. Given the new extended Tysabri dosing regimen, can I consider switching back? Is there any info on switching back that would help make this kind of decision? Answer: We do not have any direct data to answer your question at this time, so there will always be unknown risks associated with this treatment decision. Remember, there may be risks other than PML that we are not even aware of at this time, since few people have been methodically switched from an anti-CD20 drug to Tysabri. If you do decide to switch back to tysabri, consider the following information: Risk factors for the development of PML on Tysabri given at every 28 day intervals include JCV index > 1.5, lower weight (Less than 60 Kg), older age (over 60) and low lymphocyte count. You can probably mitigate against all of these risks, except low lymphocyte count, by extending the interval between tysabri infusions. Therefore, it is probably important to make sure that your absolute lymphocyte count and T cell subsets are normal before restarting tysabri. If possible you may want to wait until your B Cell count is on the rise, but this could take up 6 to 18 months after your last Ocrevus infusion. Before restarting Tysabri make sure you have a new baseline MRI of the brain (only is required to monitor for PML) and then monitor with MRI every 4 to 6 months after re-starting Tysabri Make sure you have a good discussion with your MS specialist about your current disease type and stage and risk of inflammatory activity; tysabri is not very effective in well established progressive MS and the risks of treatment would not be warranted if you are in this stage of the disease Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I have been on Aubagio for almost two years. Is it OK to have the Shingrix vaccine? Everyone tells me it is an inactive vaccine. Thanks. Answer: Yes, it is true that Shingrix is not a live viral vaccine. Use of Shingrix while on a DMT (ie, aubagio) may be blunted due to the MS therapy. Per CDC, if you are negative for the chicken pox virus antibody (meaning you do not have immunity against the chickenpox virus), you should not get this vaccine. Your neurologist can test for this by sending for a VZV IgG antibody titer (blood test). If you are younger than 40, there is a chance that you are negative for the chicken pox antibody (those over than 40, and before the vaccine era for VZV, are likely to have memory immunity for chicken pox and could get the Shingrix vaccine). Before you pursue this vaccine, please discuss with your MS provider as there may be other considerations for this vaccine in your specific case. A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I have RRMS but a mild form. My neurologist/MS specialist doesn’t believe a DMD will benefit me. All symptomatic medication has given me all the side effects and seem to be sensitive to them. Your thoughts?? Answer: Decision to treat or monitor off a DMT is a case specific decision. In most circumstances treating is favored as the DMTs are preventative rather than restorative. The best time to use DMTs is early in the disease course for that reason. The decision when to come off therapy is challenging given the unpredictable nature of the disease. Prolonged periods of disease quiescence may indicate that the inflammatory phase of the disease (the phase we are best able to treat) has passed and the patient is unlikely to benefit from DMTs any longer. Any decision to come off therapy with a monitoring plan should always be done in coordination of your treating physician. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Is it normal to feel like you’re going through the five stages of grief after a diagnosis of RRMS?1/9/2019 Here is My Question:
Is it normal to feel like you’re going through the five stages of grief after a diagnosis of RRMS? I feel like I have been stuck in denial since I haven’t had any symptoms since my diagnosis last year. Answer: With any life changing event, it takes time to process the "new normal". MS is no different. Most patients go through a period we call the adjustment reaction which can be experienced many different ways, including denial and grief. Some may have a return back to their normal baseline function after the early diagnosis and feel pretty good. They go about life and ignore or compartmentalize the diagnosis and even start to wonder if the diagnosis was a mistake. This can be dangerous because it leads some to stop seeing their physician or even stop their preventative therapy. It's an "out of sight, out of mind" scenario. They effectively are led into a false sense of security. We have learned that MS is unpredictable in the short term, but natural history data paints a fairly clear picture of what occurs in the long run if no action is taken to alter the course of the disease. On the path of the adjustment reaction to the diagnosis of MS, it is important to be vigilant and not get stuck in this phase. If the adjustment reaction leads to intense anxiety or depression, I would urge patients to discuss this with their physician. Many times, medicine for those symptoms are not necessary, but if protracted, some may need that help temporarily until they get to the other side and leave the adjustment reaction behind. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am 37, and just found out I am pregnant with an unplanned blessing. Currently on Lemtrada, had 3 rounds, last one was Nov 2017. Prior to starting Lemtrada I was on Tysabri and went off to have a baby. I had a horrible post-partum relapse at which point my neurologist told me to be done having kids (I have 2). Which leads us to today...I’m about 6 weeks pregnant and I called my neurologist to get his advice and he essentially told me to terminate this pregnancy. Have any of you had success protecting you patients from relapses post pregnancy? This resource is amazing...thank you! Answer: Based on what is provided here I have no idea why termination is being suggested. If the last infusion was over a year ago the drug is long gone from the system. I would make sure to seek a second opinion. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Strategic Initiatives Cain Denius Scholar of Mobility Disorders Distinguished Teaching Professor Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Medical Center Dallas, Texas Here is My Question:
I was just prescribed Humira for RA. I also have RRMS, and have not done well with Tysabri; I was recently put on Rituxumab. My doctor doesn't see a problem with both drugs, but I want to make sure there aren't any interactions. What are your thoughts? Answer: Humira is relatively contraindicated in patients with multiple sclerosis. This should only be used in patients with MS and RA who REQUIRE Humira to control their RA AND their MS is well controlled. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego 200 West Arbor Dr Medical Offices North MC 8687 San Diego, CA 92103 Here is My Question:
In what circumstance would Rituximab be used as a first line therapy? Answer: Generally, Rituximab would be considered appropriate as a first line therapy in the same circumstances that Ocrevus would be considered as first line therapy. The difference is that Ocrevus is specifically approved by the FDA for treatment of relapsing and primary progressive MS and easier in most circumstances to get approved by insurance carriers for these indications. The exception is Kaiser Permanente insured patients, where Rituximab is part of their formulary for MS treatment. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I currently am on Ocrelizumab. My doctor does no blood work other than CBC and LFT before each dose. They did check for hep b before the first half doses. Are there additional blood tests that should be done while being treated with OCREVUS? Answer: You doctor is doing the minimal amount of blood testing required for people who are already receiving Ocrevus. Many MS specialists do additional testing for the following reasons: 1. Many doctors monitor immunoglobulin levels (IgG, IgM, IgA) before starting treatment and then every 6 to 12 months. A significant number of people on Ocrevus will become deficient in IgM and IgG antibodies with prolonged treatment and this may increase the risk of certain infections, particularly upper respiratory tract infections. These deficiencies can be corrected with immunoglobulin infusions if necessary. 2. Most doctors recommend regular cancer screenings, particular breast and cervical for women and skin for all 3. Some doctors track CD19 blood counts to adjust the interval between infusions, generally lengthening the interval between treatments to hopefully minimize the potential risks of long term treatment. The current recommended treatment interval is every 6 months, but there is some evidence that this interval can be extended if B cell counts (CD19 + cells) remain suppressed 6 months after infusions. This requires considerably more study, before this practice can recommended. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I am 54 years old and have been diagnosed with MS for10 years though in hindsite I realize I how symptoms for 10 years prior. My question is about changing to a different DMT after two years on Copaxone. I’m of thin build and have just run out of options for injection sites. I have for the last 6 years had no activity on my MRI but have slowly progressed, so now my neurologist believes more progressive disease. I was on Beta seron for three years, Tysabri three years ( jc negative) and Copaxone one for 2 years. My neurologist wants me now to take Tecfidera. I’m conflicted as what to do and if this really is the best path forward. Thank you. Answer: I’d suggest speaking to your neurologist about one of the b-cell biologics (Ocrevus, rituximab) or possibly siponimod (similar to gilenya). These therapies have shown ability to slow down the rate of progression (particularly in individuals with signs of recent inflammatory disease activity. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Does Difan Flex medicine contain cortizone? Answer: Difen Flex does not contain cortisone, but rather Diclofenac which is a Non Steroidal Anti Inflammatory medicine. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Are hyperintense signals in the subcortical region of the brain a sign of multiple sclerosis?12/18/2018 Here is My Question:
Are hyperintense signals in the subcortical region of brain a sign of MS?? Answer: Hyperintense signals on certain MRI sequences can be seen in MS and a variety of other conditions. To determine if the changes are due to MS depends on the size, shape, location and total pattern seen on a MRI. There are many things that can cause sub cortical changes on a brain MRI other than MS, so the context matters a lot. Benjamin M. Greenberg, MD, MHS, FAAN, FANA, CRND Vice Chair, Translational Research and Strategic Initiatives Director, Transverse Myelitis and Neuromyelitis Optica Program Co-Director, Pediatric CONQUER Program Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Queston:
I am 23 and have MS. I have been on Ocrevus for the past year. I have had a flu shot. My understanding is that getting a pneumonia vaccine is safe for people with MS. Is it still safe to get a pneumonia vaccine while on Ocrevus? If so, which should I get, PCV13 or PPSV23 and if both in which sequence? Is it best to get the pneumonia vaccine just before my next infusion or after? Answer: It is certainly safe to receive the vaccine, other than the small risk of some allergic reaction. We do not know how effective the vaccine will be in people on Ocrevus or other B cell depleting therapies. Evidence in children with immunodeficiency suggest that the Memory B Cell subset, which is depleted by Ocrevus and other B cell therapies, is required for effective immunization against pneumococcus and it generally takes longer than 6 months for the memory B cell population (CD19+, CD27+ cells) to return after an Ocrevus infusion. In high risk populations (older patients and those with splenectomy) we would immunize before starting treatment. As a 23 year old you many have been immunized in childhood, since they started childhood immunizations in 2001. You may want to check your pediatric records. As long as you are not significantly disabled or immunocompromised and as log as you still have a high functioning spleen, I would not consider you in the high risk group. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director 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. Here is My Question:
Have you ever heard of Autohemotherapy? I know it’s something not well known but can it be used to fight MS. Answer: Autohemotherapy has been around for over 100 years, more commonly used in Europe. There is no good evidence (not even class III) of benefit in MS, but very few studies are reported. Mostly just anecdote at this time. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
My glutamine level is low. I am vegetarian and wonder if that could be part of it or could it be something else? Answer: Glutamine is considered a conditionally essential amino acid, which means that your body is able to synthesize it, but it becomes essential under periods of physical and emotional stress, systemic illness, high metabolic activity or severe deficiency in the diet. It is synthesized primarily in muscle and levels are related to muscle mass with lower levels occurring with lower muscle mass or muscle wasting disease. It is also the amino acid in the highest concentration in your blood stream. A low level could be due to measurement error (a common reason), metabolic stress, muscle wasting or diet deficiency. Supplementation and muscle strengthening is effective at improving this deficiency Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego This My Question:
Is this neurotrophic keratitis? I was diagnosed with MS in 2013, symptoms in 2011. I have several areas of demyelination on brain MRI and c-spine at C1 and C5-6. I was seen by ophthalmology in 2016 for eye redness without discharge. I had keratitis and was given steroid drops. I was recently seen again and diagnosed with keratitis with corneal ulcer and treated with steroid eye drops. I have had similar issues in the past two years but did not seek treatment because there was no drainage, it was not that uncomfortable and resolved in 3-5 days on its own. I asked my ophthalmologist if this was related to MS and was not given an answer. I do not wear contacts, have not injured my eyes. I did have lasik surgery about 10 or so years ago. My eyes may get a little dry but I have never been diagnosed with dry eye. I will see my neurologist in January, is there anything I should be asking him to evaluate or is not related to MS? Answer: This would only be considered neurotrophic keratitis if you have damage to your trigeminal nerve, leading to denervation of the cornea (lack of sensation in the cornea). Typically in MS trigeminal nerve issues manifest not as neurotrophic keratitis but rather as trigeminal neuralgia, an extremely painful form of headache/facial pain. Usually with neurotrophic keratitis, the trigeminal nerve dysfunction causes numbness/lack of sensation and this lack of sensation in the face and in particular the cornea leads to the keratitis. You can see a cornea specialist or neuro-ophthalmologist to try to figure this out. Benjamin Osborne, MD Associate Professor of Neurology and Ophthalmology Director, Neuromyelitis Optica (NMO) and Neuro-Ophthalmology Clinics Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital |
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.
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