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Here is My Question:
What type of therapy, cognitive, behavioral, self, group or type of counselling can I ask for to be able to come to terms with living with MS and constantly being perceived as a fake and a liar by people who truly think that they know what MS is all about and you cannot teach them anything new. So they are not willing to listen. I am not coping well with this and have not found anything to be helpful so far. Ignoring when it is your 24/7 life is seeming to be impossible for me. Answer: Thank you for writing in with this question. It applies to many people with MS, who experience their family and friends not understanding what it is like to live with MS. There are many different types of therapy. Cognitive-Behavioral Therapy has been shown to be helpful for people with MS who are experiencing depression and anxiety, but this does not mean that other forms of therapy are not helpful. Rather than choose your therapist on the “type” or theoretical orientation, I would recommend choosing based on the therapists knowledge of MS and/or other chronic medical conditions. People with MS often feel that they have to educate their therapist about MS, but there are many therapists who already have an understanding of what it is like to live with MS, and those professionals are preferable. You can locate a therapist who is knowledgeable about MS through the National Multiple Sclerosis Society, 1-800-344-4867. The MS society may also be able to refer you to a support group for people living with MS. Just as family and friends may not understand what it is like to live with MS 24/7, other people who have MS do understand that, and can be a great source of support, information, and strategies for living well with MS. David Rintell, Ed.D. Psychologist, Partners MS Center Boston, MA Question:
I have RRMS and have done well for the last 4 years. I have begun to have pain in my legs, one day it is my knee and thigh and then the next day it is my shins and then floats around to another place. I have numbness across the upper part of my back and those goosebumps feelings up and down my legs. Could this be a relapse or just a continuation of the disease? I am almost 60 and hate not being able to get a good walk in without pain. Answer: Your symptoms certainly sound annoying but do not sound like a relapse. It will be important to discuss these symptoms with your MS specialist and find ways to continue with your activity level. For instance, pain in the knee may be due to a foot drop and requires a specific treatment whereas fluctuation and migrating burning pain may be neuropathic and require another treatment. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Will memory problems get worse as my MS continues to progress? I have Secondary Progressive. I am on Aricept but considering to stop because of vivid dreams. Answer: Certainly memory problems can get worse but often these problems remain very stable for many years even when a person’s physical condition is worsening. It is important to work with your mind as much as possible to maintain cognition. Learn new things, work on crossword puzzles, play games with family members; all of these things can help. I encourage you to read our page on cognition CLICK HERE, as Lori Kostich from the Mandell Center for multiple sclerosis in Hartford, CT has written some great pieces on memory and ways to improve. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
What is "inactive" multiple sclerosis? There are all sorts of terms for MS but I have never sees inactive MS. Considering this I still have MS pain and all its symptoms. Can someone with inactive MS still be in a wheelchair? Answer: Inactive means that there is no ongoing evidence of inflammatory demyelination. In practice this is impossible to prove. People with longstanding MS rarely show obvious signs of inflammation on MRI and standard MR imaging is notoriously unable to detect ongoing activity continuing to damage the nervous system. Inactive does not mean you do not have any problems from MS. After all the damage that was done when the MS was active does not go away Think of a person who has a spinal cord injury. After the injury is completed there is no further active process but they remain wheelchair bound Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I just got Cymbalta prescribed for my MS nerve pain, but this is an antidepressant medication. Is this the best for nerve pain? I tried Lyrica and it did not work. In fact it made my symptoms worse (side effects) The problem is I almost always get the side effects. My other option was Neurotin. Reading these side effects scared me. Which is more suitable for MS pain with the least amount of side effects? Answer: I have written several responses in the past related to the treatment of neuropathic pain in MS. Please search the site for a more detailed response (just type "neuropathic pain" in the search box that is in the upper corner of this page). I have found that Cymbalta can be effective and is approved by the FDA for neuropathic pain. Often we need to use Cymbalta in combination with lower doses of medications like gabapentin (neurontin) and lamotrigine or older medications like phenytoin and carbamazipine Ask your doctor about all these medications. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have secondary progressive MS and would like to know what I can do to better my daily life. I haven't heard anything to help. Answer: There are many things anyone can do to improve their quality of life once their particular problems and goals are identified. Why not sit down and start writing out the things you would like to see better and discuss this list with your doctor. Some things are out of our control but others may be within grasp if we reach out for help. One of our bloggers has secondary progressive MS. Reading her blogs might help you start the list I mentioned above. I suggest reading this blog CLICK HERE And here is a list of the rest of Liz's blogs that might be helpful to you CLICK HERE You might also want to join MS HealthAllies to see if there is someone like you that could share information and knowledge to help you better your daily life. Good luck to you. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I am not on any disease modifying medications and this concerns me. I was diagnosed 3 years ago at age 55. I have had 3 opinions of my type of MS. 1. Benign or quiet MS from my hometown neurologist 2. Primary Progressive MS from the Harper Medical Center in Detroit and 3. No label from Cleveland Clinic. I have had 4 MRI's and there is no change from the initial findings of 4 lesions in brain and 2 in my cervical spine. I feel that my symptoms are progressing. My gait seems to be off and I experience numbness, involuntary toe movements and sensations in limbs. I have fallen a couple times from my leg giving out. Should I be concerned that I am not on any medications? Answer: If you think about it, it makes no difference which MS specialist was correct about your disease type. Although I suspect that your condition is hardly benign by your description, in all of the disease types described there is no evidence that standard disease modifying therapies for MS are beneficial. But this does not mean there is not a lot more that can be done to help you! I would return to one of your MS specialists and tell them about your symptoms and your falling. Ask them what symptomatic and rehabilitation therapies can be used to improve your symptoms and maximize function. Remember, the only treatments demonstrated to improve function in MS patients is resistance training and aerobic exercise programs. You just may need some help getting started. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I was diagnosed with RRMS in 2011. About three years ago I began developing pain in my neck. I am fine except when I bend my neck down and either right or left. I feel a sharp shooting pain. My neurologist told me it could be Lhermittes Sign. I was placed on Lyrica to help with the pain. A year later I suffered from memory loss and discontinued the Lyrica. I have now been prescribed Tramadol for neck pain and severe back stiffness/soreness. Does this seem like a good recommendation? Is there another avenue that I should discuss with my neurologist in regards to pain management? Thank you. Answer: Lhermitte’s phenomenon is an electrical or tingling shock like sensation that radiates down the spine or sometimes to the right or left arm with forward neck flexion. Sharp shooting pain could represent Lhermitte’s but is more often related to compression of a nerve root by arthritis or disc herniation or both. The fact that you now have chronic neck pain supports this hypothesis. You may want to ask your doctor to evaluate you for cervical spondylosis or another process that causes sharp jabbing pain with neck movement. The treatment will depend upon what is found. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have had MS for ten years. Is the burning and prickly feeling on bottom of my feet a relapse or is it normal for someone with MS and something that I need to get used to? Answer: Burning and prickling sensation on the bottom of the feet is very common in MS. This is not a relapse and can wax and wane during the day. If the sensation is too annoying, especially if it interferes with sleep, talk to your doctor about trying a medication like gabapentin or Lyrica, among many, to block these symptoms. The medications we use are generally well tolerated in most people are not addictive. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I struggle with extreme tone in my soleus making my foot prone in a dorsi-flexsion position. The tone is so strong that it throws me off balance -- even when trying to brace my foot in a neutral position using an AFO. No amount of stretching seems to help. A massage therapist recently told me that I need to break down fascial adhesions in my calf that are keeping me from stretching effectively. I can't find any medical research on fascial adhesions. What is your view of this? What are your recommended approaches to breaking down fascial adhesions? Other ideas? Answer: Using a foam roll can be helpful in breaking down fascial adhesions, but it is not likely that this alone will help with your spasticity. While stretching the lower extremities is very important for spasticity management and mobility in general, it is not always enough to manage your symptoms. If the spasticity is affecting your function, balance, and safety it would be beneficial for you to make an appointment with a physiatrist. A physiatrist is a type of doctor who can help you manage your spasticity from a medical standpoint. If you do not have access to a physiatrist, your neurologist can also help with this. In the mean time, keep up with the stretches. You might also seek out a physical therapist; but in cases of moderate to severe spasticity, having the physiatrist and physical therapist work together with you would the best option! Sarah Wargo, DPT MSCS Outpatient Rehab Mt. Sinai Rehabilitation Hospital Hartford, CT Here is My Question:
What do you think of Cell Tex in Houston where they take stem cells, harvest them and you go to Mexico to have them put in. Do you think there is any hope in this process? Answer: There is much hope for the future of stem cell therapies to achieve many different goals, but there is no evidence at present that stem cell therapy of any type produces any meaningful regeneration in the nervous system of MS patients. If you search 'stem cells' in the upper right corner search button on this page, you will find quite a few blogs written about stem cells that you might find interesting. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Center Here is My Question:
My question requires some background information. I am a 46 year old female diagnosed in 1999 when I was 31 years old. My 1st documented symptom happened in '94. I have tried the following treatments: Copaxone '99-'04, Rebif '04-'06, Cytoxan while on Rebif in '06, Tysabri '07-'08 straight onto Rituxan in '08-'10. Just after Rituxan I had 8 weeks of Plasmapheresis followed by 2 years of monthly IVIG & Steroids only '11-'13. All of these treatments were stopped due to antibodies and/or continual progression/ineffective response. In 2013 I decided to go back to Copaxone which I stayed on until an MRI showed active lesions in April '14 (my 1st mri to show 'active' lesions in all this time). I started Tecfidera in July '14 & had further progression which prompted me to stop it in Nov '14 just as Lemtrada became approved in the US. My neurologist advised a drug holiday while waiting for Lemtrada certification. With no idea when certification may come & 5 months of no treatment I decided to try Aubagio while waiting, which I am in my 3rd week of now. I am now considered Relapsing-Progressive, am in a scooter full time, cannot take a step, stand up straight or raise my arms above my head. Since Tecfidera I am losing the use of my right hand. I believe my EDSS is 8-8 1/2. I have two questions: 1. When Lemtrada does become available to me, having had no positive result from Chemo, Tysabri or Rituxan, is its mechanism of action likely to have an effect on my particular MS case? If so do I have any hope of it stopping my progression being at the stage that I am? 2. And if not Lemtrada is Aubagio the right DMD to try at this point. Thanks for your time! Answer: I'm sorry to hear of your experience with the various DMTs. As physicians, we try out best to match up an individual patient's form of MS to the "right" DMT. However, we do not have a biomarker (ie, a blood test) that can tell us exactly where the trouble is in the immune system (for a given patient) so we could more readily match that immune dysregulation to a DMT with a specific and complimentary mechanism of action. It really is a "trial and error" process. What's more, there is the possibility that an individual with MS may have a disease course that will not be stopped or significantly altered by any of our currently available DMTs. From what little I know about your case (and this opinion cannot substitute for the opinion of your specialist who knows you), you appear to have persistent inflammatory disease activity (particularly given the new MRI activity you mention). This signals to me that there is still a chance that a DMT could be helpful in your situation. Lemtrada is the newest DMT approved for use. It is very effective (when looking at the data from the pivotal clinical trials) in reducing inflammatory disease activity. However, it does come with a significant (potential) downside--autoimmunity. Specifically, there is a greater risk of developing a condition where your immune system could start attacking your platelets (causing serious bleeding), kidneys, and thyroid. These tend to be treatable conditions, but they are not insignificant. Whenever considering a DMT, you and your physician must weigh the pros/cons. We do not expect that our DMTs will reverse already accumulated disability, but they may mitigate further progression (at least in the short term... ie, a couple years). This is something that would need to be considered in your case. These are not easy decisions, and I think it comes down to what your goals are and the level of risk you are willing to assume. I hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Here is My Question:
First a little background on myself. It took me 10 years to get diagnosed. My Neurologist and I have discussed the fact that at the time of my diagnosis I may have already progressed to SPMS. I started taking Avonex, then Copaxone, tehn Tecfidera and finally Gilenya. Obviously the first three did not work out for me and I had a bad reaction to Gilenya. I also tested positive for the JC Antibodies ruling Tysabri, by my choice. Now I am not taking any DMT's. Since getting off any DMT I have noticed I have noticed a changed in my symptoms. I have become more moody and I have been having Migraines on a regular basis. I have also noticed my other symptoms have ramped up, being the pain in my legs and fatigue. So my question is as follows, is it possible that my MS is progressing as my Neurologist and I have theorized? And am I moving closer to SPMS if I am not already there? Thank you in advance for answering my question. Answer: The transition to Secondary Progressive MS (SPMS) is not a single point in time, but in the real sense of the word--a transition. Individuals can still have relapses during this transition as well. With that said, we are trying to get away from these disease subtypes/monikers because it doesn't really help us much in terms of treatment recommendations. As a field, we are trying to move to a paradigm where we ask a very simple question: Is your MS still inflammatory? The reason why this is important is that our disease modifying therapies (DMTs) are designed to reduce inflammation. While it is true that we tend to see less signs of inflammation in the classically described SPMS (and primary progressive MS), there are individuals that still demonstrate inflammatory disease activity despite their diagnostic assignment to a progressive form of MS. Inflammatory disease activity is manifest by clinical attacks (or relapses) of MS, and signs of new, enlarging, or enhancing lesions on MRI of the brain and spinal cord. In my mind, these objective findings outweigh the older MS descriptors--that are somewhat arbitrary. In order to determine if someone is inflammatory (or progressing), this should be done with the help of a neurologist who has been tracking your exam over time (preferably with objective measures such as walking speed/time, cognitive performance testing, and the neurologic exam). This is important because not all symptoms (perhaps those you are describing) are due to new or inflammatory disease activity, but is a manifestation of older MS scars that are disrupting nerve signal transmission. There are many reasons that can occur, and the neurologist can help determine if this is the case. In many instances, conservative measures can go a long way in mitigating those symptoms (that are not due to a new MS attack) to make your function in daily activities easier. I would not necessarily interpret an increase in symptoms as a sign of progression to SPMS. That determination should be done with objective data obtained by a neurologist over time. Hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center  Ellen Lathi, MD, is the director of the MS Center at St. Elizabeth’s Medical Center as well as a well-known speaker on treatment issues and wellness in multiple sclerosis. She is involved in numerous clinical trials at the center relating to the treatment of MS and is widely recognized for her clinical expertise and comprehensive approach to patient care. She also directs the MS Service Dog Program, sponsored by the NMSS, in which highly trained dogs are trained to assist patients with MS. In addition, Dr Lathi has been repeatedly recognized as one of Boston Magazine’s “Best Doctors” and one of US News and World Reports' "Top Doctors”, and she has received the prestigious Physician Health Care Professional Volunteer award from the Central New England Chapter of the National MS Society. She is a member of the American Academy of Neurology, Chairman of the Clinical Advisory Committee of the Greater New England Chapter of the National MS Society and a member of the Consortium of MS Centers.
Question:
What does the term "wash out period" mean? My research indicates that it could mean lots of things like:
Answer: To "wash out” simply means to remove a substance (usually a drug) from the body either naturally or through an accelerated process. Many drugs hang around for quite some time after your last dose. For instance, Tysabri takes 3 months to “wash out” naturally and Aubagio can take many months. We can sped up the elimination of Tysabri by performing plasmaphoresis and we can sped up the elimination of Aubagio by giving an individual cholestyramine. However, the biological effects of a drug can persist long after the drug is eliminated from the body. Lemtrada is a great example. The effects of this drug persist for years after your infusions are complete even though no Lemtrada is detectable in your body 60 days after your infusions (elimination half life of 2 weeks). Hope this answers your question. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Don't miss the latest Multiple Perspectives in Multiple Sclerosis
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I am a 32 year old female diagnosed with RRMS 16 years ago and have been on Tysabri for approximately 8 years with success. My JCV test came back with a first positive result in December 2014 and retested 4/18/15 with a titer of 2.71. My neurologist wishes me to have a 3 month washout period, then begin intravenous steroids when my next Tysabri infusion would be “due” (continue monthly for 6 months) and ultimately change my treatment to Tecfidera. I was initially treated with steroids, then Copaxone for 2.5 +years (average relapse rate of every 3-4 months), Avonex for 2.5+ years (same relapse rate and discontinued after two seizures). I was medication free for 2 years and then started Tysabri. My life has never been the same (in a good way)! I am hesitant to go off of Tysabri and on Tecfidera for a few reasons:
My questions are as follows:
Considering this information and my questions – what guidance can you provide me? Answer: Great questions. I only wish we had more data for better answers. Here is what we think we know:
Your options can be separated into three categories: The safest option is to stop Tysabri for 3-6 months with monitoring MRI scans of the brain obtained before stopping, then at 4 months and 6 months after the last infusion. Tysabri take a good 3 months to wash out of your system. Since PML usually begins well before a person is symptomatic, you want to make sure there is no evidence of PML on your MRI before even stopping Tysabri; no one has developed PML more than 6 months after stopping Tysabri so this would be the safest time to start another therapy. Any clinical or MRI activity before 6 months would prompt early initiation of another therapy. At 6 months you could start any therapy including rituximab. The most effective option for stopping Tysabri and preventing disease activity from returning would be to start a DMT immediately after stopping Tysabri (or usually within a month when it can be arranged) Options could include Aubagio, Gilenya, Tecfidera depending on a number of factors you can discuss with your doctor. Again, you should have an MRI before stopping Tysabri and then 4 and 6 months after stopping Tysabri to make sure there is no PML developing or rebound MS activity. Rituximab is a difficult option until we are sure there is no evidence of PML since it irreversibly decreases your B cell counts for up to 6 months after treatment. If you developed PML during this interval it could be difficult to treat. The most effective option may be to increase the interval between Tysabri infusions to every 8 weeks and monitor for PML with MRI scans at least every 4 months. We use a very rapid protocol that does not include gadolinium unless new T2 or DWI hyper intensities develop. To answer your last question, I think the CD20 agents like Rituximab and the other products in development are outstanding for MS. We have no idea if they are better than Tecfidera at this time, but that would be my bet. Take this information to your MS specialist and see what he or she thinks. If you decide to just increase the interval between Tysabri infusions to every 8 weeks, make sure your MS specialist contacts Dr Ilya Kister at NYU. He has a large registry monitoring all the patients on this reduced dosing frequency. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Is there a biorepository that a patient can have their samples delivered and have someone test them for rare diseases when no common disease definition quite fits their profile? Answer: There are several biorepositories that store specimens (usually blood) from people with well described diseases that can be used by researchers to study these diseases. For multiple sclerosis one of the larger research biorepositories is run by the Accelerated Cure Project. There are many companies and universities that test biological specimens (eg.blood) for various diseases but the testing is not done randomly. You can either test for suspected diseases, if such a test exists, or you can investigate for a rare disease with the assistance of a specialist physician (e.g. a neurologist for a neurological disorder) usually working with a medical geneticist. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My right leg is weaker than the left, almost like it is dead. I constantly trip because I can't control it, and I also drag my right foot. Even though I use a frame I find it hard to keep my balance and walk due to the weaker leg. Is there anything I can do to help me with muscle recovery in my right leg? Answer: For people with MS who suffer from a weak leg with significant proximal (the muscle that work at the hip joint) and distal (the muscles that work around the ankle joint) weakness, it is extremely important to take a 4 step approach to management that requires the assistance of your MS specialist, a physical therapist with neurological training and an orthotic expert. 1. You must eliminate the foot drop to improve safety, gait mechanics and stresses on other joints, particularly the knee and hip. The traditional way to do this is to obtain an ankle foot orthotic device (AFO). I prefer the dynamic AFOs with a foot plate that provides a spring action to help with the, “toe off” phase of your gait. A popular model for those with more significant weakness is the Blue Rocker. As an alternative to an AFO, you may want to investigate a functional electrical stimulation device (FES) that electrically stimulates the weak muscles (called the foot dorsiflexors) to contract at just the right stage of your gait. There are two available models, the Bioness and the WalkAide. Both have their advocates based on various features and means of activation. The last time I looked the Walkaide was considerably cheaper, but both range from $4,000 to $6,000 and there may be difficulty obtaining insurance approval. These devices are well tolerated, work well and do not restrict movement like the AFOs. They also tend to decrease spasticity in the limb and strengthen muscles, both beneficial features. 2. You need to ensure adequate leg lift by your proximal muscles. This is achieved through progressive resistance training (strengthening) and can be enhanced through the use of a Hip Flexor Assist Orthosis (HFAO). The HFAO basically looks like a weight lifters belt with two bungee cords attached that descend down both sides of the leg and end by attaching to your shoe. When you walk the bungee cords are stretched when the leg is extended and assist with hip flexion when you bring the leg forward. 3. You may also benefit from the addition of Ampyra. This is a Potassium channel blocker approved by the FDA to improve walking speed. It accomplishes this by improving the efficiency of electrical currents in your nervous system and, therefore, may improve the activation of the muscles in your weaker leg. 4. Physical therapy with a therapist trained in neurological disorders is essential to put everything together in a customized fashion to improve your walking safety and efficiency. You may also benefit from a stabilization device such as a cane or walker depending on your degree of postural instability and weakness. You can also read our symptom pages for strength and balance issues http://www.healthcarejourney.com/balance-and-walking-issues.html 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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