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Here is My Question:
Due to vertigo & dizziness, I was given a Tilt Table Test, which was positive, as well as caloric and rotator chair tests that point to vestibular pathology and nystagmus. However, my MRI was clear. Could MS be a possibility? Answer: Most likely your symptoms correspond to vestibular pathology making MS a less likely explanation. In particular with a normal brain MRI, I simply suggest you to find a good ENT physician (Ear/Nose/Throat) and perhaps a good physical therapist for vestibular rehabilitation, and eventually do surveillance brain MRI in the future if symptoms persist or worsen. I hope this helps. Augusto Miravalle, MD University of Colorado, Denver 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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Q:"I am entering my 8th year with PPMS. What is being done to help and are any comparisons to check with?"
A: Primary progressive MS (PPMS) poses many challenges, not only for the person with this type of MS, but also to the medical and research fields. Although there remain fewer treatments for people with progressive MS, there is a great deal of energy in the research field focused on improving the understanding and care of progressive MS. In 2012 several organizations joined forces to begin an attack on progressive MS, as the International Progressive MS Collaborative. The MS societies of Canada, Italy, the Netherlands, the UK and the USA, and the Multiple Sclerosis International committed to move forward and became the International Progressive MS Alliance. In 2014, the Progressive MS Alliance developed policies and principles to govern their work, and created a funding mechanism specifically for research in progressive MS. For more information about their work, please see the link http://www.progressivemsalliance.org/. To find out more about the research they are funding, go to http://www.progressivemsalliance.org/research/research-projects-funded-by-the-alliance/ Please also see the entry on 9/19/14 to read a bit more about some other exciting research in people with PPMS... READ MORE Deborah Backus, PT, PhD, FACRM Director of Multiple Sclerosis Research The Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center I have PMS. If I work on building my muscles will I improve my mobility? Is it possible to get my motion back? I was told once I lost it, I won't get it back. Is this true?
It is certainly possible to restore motion and enhance fitness and well being even with severe disability but often to achieve success requires the use of sophisticated rehabilitation equipment such as the lokomat system, the Giger MD locomotion system and the functional electrical stimulation bicycle. This type of equipment is often available in spinal cord rehabilitation institutes and in some physical therapy departments. In San Diego, one of my colleagues, Dr Marcus Bradley has a non profit rehabilitation institute with this capability called VIP neurorehabilitation. Check out their website and try them out if you live in Southern California. Otherwise, look into rehabilitation institutes in your area. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego At the Mandell Center we certainly work on strength, but also balance and stretching. A good idea would be to find a physical therapist in the area who is an MS Specialist (MSCS). To find one, go to www.mscare.org, this is the website of The Consortium of Multiple Sclerosis Centers. Click on "contact us", fill out the form and ask to be connected with a physical therapist who is an MS Specialist in your area. It is hard to offer specifics on-line, but an evaluation and maybe some treatment by a skilled PT would give suggestions as to specific types of stretching and /or strengthening exercises would be appropriate. Lori Ann Kostich M.S. CCC-SLP Mandell Center for Multiple Sclerosis Hartford, Connecticut Here is My Question:
How soon after delivery should a new mother resume Avonex? If she chooses to breast feed and withholds treatment for several months, do the possibilities of exacerbations increase? Answer: The decision on when to resume disease modifying therapy (DMT) after delivery should be taken on a case-by-case basis. Although there is evidence that exclusive breast feeding may be protective against MS disease activity, there appears to be an increased risk of relapse in the immediate post-partum period. The best indicator of risk is how active your disease was the year prior to becoming pregnant and during pregnancy. If a patient had a very active disease course leading up to pregnancy and/or an eventful MS course during pregnancy (this is less common), then it may be advisable to get back on DMT immediately while using formula for infant feeding. A protocol we use to determine the likelihood of problems around the corner is to schedule an MRI of the brain with contrast at the 6 week mark after delivery. Because contrast is given, we err on the side of caution and have the mother "pump and dump" the breast milk for 24 hours after the scan. If there are signs of return of disease activity, I typically recommend returning to DMT at that point. Otherwise, we feel morre comfortable that exclusive breast feeding may be all that is needed during the post-partum period. This should be discussed with your MS health provider to determine the best course of action for your particular form of MS. Hope this helps. A. Scott Nielsen, MD 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.  We are thrilled to welcome Brant Oliver, PhD, MS, MPH, APRN-BC, MSCN to HealthCare Journey! Dr. Oliver is a healthcare improvement scientist and dual board certified nurse practitioner (APRN-BC) in family practice and psychiatry/mental health (FNP-BC, PMHNP-BC). He is a certified MS specialist (MSCN) with over ten years of clinical experience in MS care and subspecializes in multiple sclerosis mental health care. His MS related research and academic interests include biopsychosocial disability and coping/self-efficacy, system-based healthcare process and outcomes improvement, and shared decision making. He practices at the Multiple Sclerosis Specialty Care Program at Concord Hospital in Concord, NH, is Assistant Professor at the MGH Institute of Health Professions in Boston, MA, and a Faculty Senior Scholar in the Department of Veterans Affairs National Quality Scholars (VAQS) fellowship program.
Here is My Question:
Dr. Kinkel, you come highly recommended. Would you consider it a waste of your time to see a patient that has been told by two "regular" neurologists that MS is not a possibility due to normal MRI's? I've had years of neuro type symptoms, flares with horrendous fatigue, & a family history of MS. Answer: I consider no one with disturbing or concerning neurologic symptoms a "waste of time” and would be happy to see this patient. While it is likely that I will agree that he/she does not have MS, they may have another condition or I may be able to reassure or help them in another way. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Clinical address: 200 West Arbor Dr Medical Offices North MC 8687 San Diego, CA 92103 619-543-3500 (phone) 619-543-6806 (Fax) Here is My Question:
Can you have MS and not have lesions in your brain? I was diagnosed 16 years ago after years of being called "suspect MS". I had oligoclonal bands present in my CSF, documented by an Opthalmologist - Optic Neuritis, numerous symptoms and was diagnosed as having RRMS. After a number of IV steroid 'pulse therapy' sessions I was started on DMT's in 2001. I have had 3 major relapses since and a number of smaller ones. My neurologist died and I inherited a new one who says I can't have MS if I don't have lesions in my brain. I am very confused and scared. Answer: While it is certainly rare to see individuals with MS who have normal MRI scans of the brain, especially after many years, it still occurs. Whether or not your MS is at all similar to typical cases of MS is another question altogether. One condition that should always be excluded is neuromyelitis optics, also called Devic’s disease. This condition used to be considered a subtype of MS but is now considered an entirely different disease. Devic’s disease often involves only the spinal cord and optic nerves, and may worsen if you are treated with an interferon. There are other possibilities as well and you should work with your neurologist to sort out these diagnostic issues. If required, you may need to travel to an academic MS center for another opinion. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego We have had this question asked before, so we have listed a few of the links below to answer your question. http://www.healthcarejourney.com/q--a-for-virtual-ms-center/are-my-hot-flashes-caused-by-ms Hope these blogs help to answer your question.
Question:
I’ve read that sometimes signs of MS can be “invisible” on an MRI for various reasons: old areas of damage, MRIs performed without following specific “MS Protocols” (size of slices, strength of MRI machine, etc.), abnormalities that are seen diagnosed as normal “due to age,” etc., and that a general neurologist may miss signs that an MS specialist would catch. I ask this because at age 29 I became very, very ill. Up until that time I had remarkable health. Symptoms included vertigo (w/nausea), horrible headaches, extreme weakness and fatigue, difficulty swallowing any food, and excruciating traveling pains throughout my body. When taking a shower, for example, the water hitting my skin felt like shards of glass. My heart would race and I would get chest pains but cardiologists said my heart was fine. I would wake up with horrific muscle spasms, especially common were my hands. My symptoms progressed to where my vision would go dark and I would feel close to fainting. I could not hold my urine. My doctors ruled out Hepatitis, Lupus, HIV, Syphilis, and various other conditions. Ultimately I was diagnosed with Depression/Anxiety/Fibromyalgia/Chronic Fatigue Syndrome. It took 12 years for a doctor to think of ordering a brain CAT scan, results which were reportedly normal. After around 14 years, I was treated for late-stage Lyme disease & associated co-infections (as I did have a bull’s-eye rash in the beginning) by a Lyme specialist. But after ten years of treatment, despite some improvement, my PCP urged me to discontinue treatment. Now, in addition to my typical flare ups, I am experiencing visual problems. Double vision/eye muscle weakness; episodes of eye pain that can last for days and leave me with blurred vision in that eye; and most recently “light shows” - streaks of light in my upper and lower visual field that do not correlate with my headaches. Two ophthalmologists can find nothing wrong within my eyes. But both are baffled as to why they can’t seem to correct my double vision with prism lenses. Last year my son, at age 31, was hit with visual problems, blacking out/near fainting spells, severe vertigo, fatigue and leg weakness. He was taken to the ER and an MRI was immediately done finding “innumerable lesions” throughout his brain. He was diagnosed with MS. Upon hearing this, I asked my PCP & Neurologist for a brain MRI for myself. The results were reported to be “normal for patient’s age,” other than an area that was possibly an inconsequential small arachnoid cyst. So I am wondering, since some are finding MS may “run” in families, could it be possible I have MS, but perhaps my continued symptoms are from nerve damage from old lesions? Or perhaps it is the Lyme flaring up since I have been off those meds? Answer: MRI is a very powerful tool in diagnosing and monitoring disease activity in MS patients. It provides the opportunity to understand the extent of the disease in terms of the number and location of lesions, but also helps us understand the impact of brain loss that occurs as a consequence of disease progression and normal aging. Brain loss can be seen as "black holes” as well as brain atrophy. With standard MRI sequences, brain atrophy is usually not reported as it is difficult to quantify with standard MRI techniques. Brain volume can be quantified with a variety of techniques that are usually done in research studies. As an example, we are conducting a study at the University of Colorado that will longitudinally measure brain volume in MS patients on highly effective therapies and compare with brain volume on healthy controls. This study will allow us to understand the extent of brain volume loss in MS patients and compare with similar individuals without MS that are simply going through the normal aging process. In addition, other MRI techniques, like MTR, allow us to identify pathology (demyelination) in areas of the brain that appear normal to the naked eye. This technique coined the term “normal appearing brain”. This is likely the reason why patients clinically deteriorate, however, MRI might not be able to capture pathology over time. Augusto Miravalle, MD Associate Professor of Neurology Vice Chair, Education Director, Neurology Residency Program Faculty Member, Rocky Mountain MS Center University of Colorado Denver School of Medicine Here is My Question:
Is it safe for a Tysabri drug holiday lasting 3 months for a 13 year old boy? Answer: We must assume that the risks associated with discontinuing Tysabri for 3 months in a 13 year old boy is the same as the risks observed in adults; namely, there is an increased risk of his MS relapsing, although this risk is greatest between 3 and 6 months after stopping Tysabri. Much depends on the activity of his disease prior to starting Tysabri and your reasons for taking him off Tysabri for 3 months, since all risks must be considered in light of the potential benefits as well. I hope this answers your question. --Rip Kinkel 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. Q:
I have been struggling with various symptoms for about three and a half years (although some things longer) that to me seem to point to MS. Listing a few off the top of my head: vertigo, trigeminal neuralgia, word confusion, (aphasia), slurring, stuttering, memory loss, confusion, blindness in one eye, and eyes that always hurt, "jello" legs, shaking hands (especially when I reach for something), burning, tingling, and sometimes very painful toes and feet (in particular in my right foot), numb scalp/head, and sometimes face, exhaustion...well that's enough for now. The thing is, I also have migraines, which have become chronic during this time, and my migraine specialist, (who is a Neuro) attributes most of these things to migraines. I did have a normal MRI in 2010, although it was not with contrast, and was in one of those smaller MRI machines that is not enclosed. At the time I thought this cleared MS off the table, but now from what I've read, maybe not? And now my health is so much worse. Anyhow, I guess I don't really know my specific questions, I am just at a loss, and really tired of being SICK. How would you approach this with your Doctor? What should be my next step? Are there things I could be doing without an official diagnosis to lessen symptoms if it is MS? Thanks for your help. A: You said you have seen a neurologist, but is this neurologist an MS specialist? If not, we recommend that you have a consultation with an MS specialist. We aren't sure where you are located in Maine, but you can use this website as a starting point to find an MS clinic in your area (or perhaps in Boston if you are close enough). http://www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider/Partners-in-MS-Care If you let us know where you are located in ME we might be able to recommend an MS specialist for you to obtain a consult. If your neurologist is an MS specialist, you might want to seek out an independent second review/opinion. Here are some blogs to read that might help you prepare for this second opinion: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/the-diagnosis-of-ms http://www.healthcarejourney.com/physician-blog/how-to-prepare-for-a-visit-to-your-ms-specialist-the-present-and-the-future In regard to your symptoms, you can read about them and ways to help manage them. If you look for the 'symptoms' page on this site you will see a drop down menu with many of the symptoms you have listed. As an example, here is our symptom page for hand dexterity http://www.healthcarejourney.com/loss-of-hand-dexterity-and-coordination.html and one for migraines http://www.healthcarejourney.com/migraines.html We hope you feel better soon and that you get a second opinion so that you can determine whether or not your symptoms are due to MS. Write back in the future and let us know how you are. Here is My Question:
I was just recently diagnosed with MS about 2 months ago and am still dealing with the fact that I have it. With that said I was put on disability for the first time in my life and am going to start educating myself with MS. I know that Physical Therapy would be a great start to help with my balance and strengthening of my legs, which I think in turn will help diminish the tingling sensation I get in my feet that radiate up into my thighs. My question is which is a great Physical Therapist, and who is a good counselor for someone who just found out they have MS and how to cope? Thank you for having this site up it really helps to read through and see people's questions that I have had through this process. It helps to know I am not alone :-) Answer: No, you are not alone and there are many resources to turn to. This website was set up for that very purpose. We will be adding a feature over the next few weeks that will be called "MS HealthCare Journey" which will provide a 'how-to', 'step-by-step' approach that might be of interest to you so stay tuned for that. Below is a link to a blog written by Julie Hom, MPT, NCS who is a physical therapist specializing in the treatment of Multiple Sclerosis and balance and fall prevention. It contains information on how to find a physical therapist who specializes in MS. http://www.healthcarejourney.com/physical-therapy-blog/does-physicaloccupational-therapy-help-with-symptoms-from-ms Julie has written some additional blogs about physical therapy that you might be interested in as well. http://www.healthcarejourney.com/physical-therapy-blog As for a counselor, speak with your physician as they will likely know of counselors in your area that have worked with MS patients. If not, please write back and we will assist you in finding one in your area. Kudos to you for reaching out and for being proactive in finding out how to best manage your MS. Keep reaching out and asking questions. Please read the blog below for the answer...
As flu season approaches I was wondering your thoughts on getting the flu vaccine. My son is 15 and doing very well on Rebif. I was assuming the flu vaccine would be okay but not the mist since it is a live virus. If that is correct, is it okay to let my other 2 kids get the mist? Thank You!!
Answer: You are correct that you should NOT receive the flu mist vaccine as this is a live attenuated virus and not recommended for MS patients. Click on the link below to read a blog on flu shots and MS... Here is My Question:
I had a physical therapist that tried to convince me (unsuccessfully) that canes and walkers were created for the sole purpose of luring disabled people into a false sense of security so that they would die. She was able to convince my fiance that this was true. She also convinced my fiance that if I kept using canes I must be suicidal. Subsequently my fiance hid all of my canes, making me bedridden. As a result I made it clear that she was not to return. My fiancé eventually gave me back my canes thereby allowing me to get out of bed, but she's still threatening to leave me and take my daughter. She even took her engagement ring off, because this physical therapist, that obviously got her certificate out of a crackerjack box, convinced her that if I keep insisting on using a cane or walker I must be suicidal. Is there any reading material I can supply my fiance with to show her that this woman was a crackpot? Thank you in advance. Answer: Oh my, that is quite a story. Setting the story aside, here is my advice on walking aids:
In my experience people with MS often wait too long to begin using rollator type walkers; instead, they choose to struggle with frequent falls using a cane or the walls of their home or both; they use rollator type walkers for a short period of time only or skip them and go directly to wheelchairs and scooters. I think it makes more sense to use the correct type of device so you can continue to walk safely for the longest period of time. If your problems with walking tend to fluctuate, you can use a cane on good days and a rollator walker on bad days Good luck -Rip Kinkel Here is My Question:
I was diagnosed with trigeminal neuralgia this summer and have all but one of the markers for multiple sclerosis....and, have had for over 10 years. I am a young 66 but, symptoms are exhausting me. I am searching for a Texas neurologist that can diagnose me with MS and, treat me for both conditions in the Houston area. I feel I have kept the chronic conditions I have in control by herbal and vitamin therapy...so I also need that doctor to be open to that resource. Thanks for any help. Answer: We asked Benjamin M. Greenberg, MD, MHS at the University of Texas Southwestern Medical Center for a recommendation for an MD in your area and here it is: George J. Hutton, M.D. Department of Neurology Baylor College of Medicine One Baylor Plaza, MS NB302 Houston, Texas 77030 Tel: 713-798-8170 Good luck! Hi Everyone! HealthCare Journey is teaming up with StatRad to Offer you free storage for your MRIs (note: storage will be free for 120 days and then there will be a minimal cost per image...what do you think would be a reasonable cost per image?). When moving, or changing jobs/physicians/healthcare plans, tracking down MRIs can be a hassle and over the years of having MS, MRIs can end up in many different places making it difficult for your new MS specialist to give you the best care he/she can. We are doing this to help you better manage your disease and symptoms by allowing YOU to be in control of your own MRI data. We will be launching this in a few weeks so stay tuned...in the meantime please read our press release below. Here is My Question:
Can someone who was diagnosed with MS by both monthly evoked response tests and a lumbar puncture (but before there were M.R.I.'s), but has a negative M.R.I. now, can they still have the disease? Answer: By monthly evoked response tests, I assume you are referring to visual evoked response (VER) and somatosensory evoked potential (SSEP). Since the advent of MRI, we use the VER and SSEP less frequently. VER measures the function of your visual system and SSEP (how we use them) tend to measure the ability of your spinal cord to transmit electrical signals. If there are delays in these tests, it indicates that there may be an MS lesion or scar within those pathways. The lumbar puncture (LP) looks for signs of chronic inflammation that is specific for the nervous system (and tends to be positive in 90 to 95% of MS patients). With that said, it is possible to make a diagnosis of MS based on these tests (or your story and neurologic exam alone) without the use of MRI. However, it is a red flag in my mind to make a diagnosis of MS with a completely normal MRI of the brain. There are mimicking diseases of MS that can render a normal MRI scan of the brain but show disease in the optic nerves and spinal cord. If there is any question, getting another independent opinion from an MS specialist is reasonable. Hope this helps. -A. Scott Nielsen, MD Virginia Mason MS Center |
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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