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Here is My Question:
Is there a positive correlation between having MS and cancer? Many people I know with MS also have/had cancer (including my self - Stage IV Breast). Because an occurrence of breast cancer makes a patient more susceptible to future cancers, I am interested in knowing if there is a more elevated risk due to also having MS. Answer: The verdict is still out on whether there is an elevated risk of cancer in Multiple Sclerosis patients. Most studies have shown no evidence of an increased risk of cancer but several outliers have shown a decreased or increased risk. It seems unlikely that an increased risk of cancer is associated with MS based on current available evidence. However, several treatments for MS may increase the risk of certain skin cancers and cancer of bone marrow derived cells (lymphomas and leukemias) and one treatment may increase the risk of bladder cancer. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Ive come off Tysabri due to the JC virus. How long until my immune system is back to normal? Answer: The question to ask isn't so much when the immune system is back to normal (because the medication doesn't alter the intrinsic function of the lymphocytes of the immune system, but more a question of when immunosurveillance is reconstituted). Trafficking of these immune cells into the central nervous system slowly returns, and we discovered with the RESTORE study (monitoring of disease activity after discontinuing tysabri) that rebound inflammatory activity is at the highest risk between 3 and 6 months after discontinuing tysabri. Another question is, 'what is my risk for PML after stopping tysabri?'. The answer to that question is approximately 6 months. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente  Here is My Question:
I have a few questions: 3 days ago, I took my 2nd FULL dose injection of Plegridy. Is it normal to experience a loss of appetite while on Plegridy? With the first 2 injections (1/2 dose & 3/4 dose) I had minimal side effects. But, the 1st full dose injection and the 2nd full dose injection gave me intense FLS. Although they only lasted 1-2 days, I wanted to know if it's normal that my side effects got more intense, particularly after the 2nd full dose injection? Lastly, after how many (full dose) injections can I expect my body to better handle the side effects and ease up a little? Answer: Loss of appetite (usually labeled as anorexia in the PDR) is not uncommon as part of the flu like side effects of interferons. It is certainly not unusual for the side effects to worsen with the first few full dose injections. The side effects improve significantly in most people within the first 3 months at full dose. If they do not, I would certainly consider another DMT. Premedication with ibuprofen (motrin) or naprosyn (aleve) helps a little but you need to take these medicines regularly for 2-3 days after using Plegridy because of sustained biological effects. Your MS specialist can give you other suggestions if these premedications do not work. Some people get nauseous and loss their appetite because the Premedication they are using upsets their stomach. You may require a coated formulation or another better tolerated medicine if this is the case. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I'm looking for a non opioid non weight gain pain control medication. Answer: This topic is a little more complicated because there are different causes (and sources) of pain. In MS, we focus on neuropathic pain (i.e., pain originating from a scar of multiple sclerosis). Unfortunately, medications to treat this type of pain can encourage weight gain. Depending on the type of neuropathic pain, medications such as trike oral, topiramate, or keppra could be used, but they have to be used appropriately. If the pain is not neuropathic in nature but is related to musculoskeletal pain, physical therapy can be helpful. As you can see, more information is needed to determine a treatment strategy. In complicated situations, pain centers can be utilized which use a multifaceted approach of of medication, physical therapy, and wellness approach to tailor care. A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I've been told by my neurologists that I have a significant number of lesions in my C-spine area. I generally tend to sleep on my back at night, as my legs get tingly and cramp when sleeping on my side. However, after a few hours I'm awakened by pain and soreness in the back of my neck. Do you know of a device that can help and am I inflicting more damage by putting pressure in the area? Thank you. Sleepless in San Diego. Answer: The pain in your neck while sleeping is almost certainly not related to your MS. You need to find a better pillow. If you go on-line you will find an entire cottage industry devoted to the relief of neck pain while sleeping. It will require some experimentation on your part but you should find something that offers relief. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I just sent you a question about "inactive lesions" on my MRI. But I told you about certain things I was still experiencing. One was memory. Well, I just remembered, fatigue is a very big complaint. How can I have these symptoms if my lesions are inactive. I guess I just don't understand this. Sorry to bother you again, but I wanted to be clear. Answer: You ask a great question. To paraphrase, How can a person with MS have symptoms if their lesions are inactive? There are 4 explanations that come readily to my mind: 1. When MS affects areas of your brain, there is always some degree of permanent damage that remains after the inflammatory response has resolved. Remember, Multiple Sclerosis literally means Multiple Scars in your brain. These inactive areas or scars cause variable persistent symptoms and problems 2. Partially affected regions in your brain, both visible and invisible on MRI scans, may no longer function as well as previously. Conduction of electric currents through these partially affected regions—your nervous system functions through these complex electrical circuits— may falter with the slight increase in body temperature which occurs in us everyday during the afternoon and evening as part of our normal circadian rhythm. This is why people with MS most often report that their daily symptoms emerge or worsen in the afternoon and evening. This is also the reason we recommend cooling vests, hats and collars or exercising in a swimming pool with cool water. 3. Other medical problems, such as diabetes, or mood states, such as depression and anxiety, directly or indirectly exacerbate many symptoms of MS. This is why we spend so much time focusing on these issues in the clinic 4. Lastly, many medications often make MS symptoms worse. This possibility should always be considered in any patient complaining of new or worsening symptoms Hope this helps Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have a question from my pediatric MS group for you : For our kids that have lingering pain post attack: Is it possible that the kind of intense PT/OT that children who have been diagnosed with (AMP) Amplified Musculoskeletal Pain receive be beneficial to our MS kids who experienced post attack pain? Answer: Unfortunately there is no good data for this technique in pediatric MS. We encourage patients to have a detailed exam with their neurologist and physiatrist to determine the cause of the pain (neuropathic versus musculoskeletal versus spasticity) as this can dictate the best course of action. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I was on Betaseron for approximately14 years with very little side effect issues. At the end of that time I developed an inflammatory response and went on to Gilenya . On Gilenya I suffered back to back bizarre infections and after 1 1/2 years switched to Tecfidera. I have been on Tecfidera for about 1 1/2 years at this point. I tolerate it well but have recently been informed of the rising number of cases of PML related to this drug and the JC virus. I recently got my first test for the JCvirus . I am positive and my index number is 3.07. Needless to say I am very concerned about my chances of contracting PML. Since my MRI's have never shown any lesions for the last 30 years and I have been in complete remission for 18 years, can I consider getting off of the IS drugs altogether? I would like to know the very latest thinking on this please. I have been on IS drugs for more than 2 decades and think it may be less risky to stop but I would like an expert to weigh in. Answer: There is no demonstrated relationship between your JC virus index result and the risk of PML on Tecfidera. By the way the risk of PML on tecfidera remains very low. What we do know is that prolonged lowering of your lymphocyte count on Tecfidera may increase your risk of PML and other odd infections over time. This is why you need to have a complete blood count and differential ( we call this a CBC with diff) done regularly (every 6 months) while receiving Tecfidera. If you lymphocyte count drops below 900, you should be monitoring more often (every 1-3 months). We generally recommend discontinuing Tecfidera if your lymphocyte count drops below 600 for more than 2 consecutive months. Other clinicians use a cut off of 500. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Why are my baby toes red and swollen? Answer: Please provide us with more information if you would like a response to your question Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Question:
I was on Cipro multiple times in the past 5 years for UTIs that did not respond to other antibiotics and now I have developed MS. Could my Cipro use have caused my MS? Answer: There is no known study linking Cipro exposure to the development of MS, but one thing to consider is that the MS may have been going on for some time, leading to some bladder function changes and increasing the risk of the UTIs. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
Hello all, I was diagnosed with MS in January, 2014. I first started with Gilenya but I got worse. My neurologist stopped the medication, which I'm grateful for. I've been on Tecfidera for the past 3 weeks. I haven't seen any changes, except for the flushing. There has been no improvement with my walking, it's pretty much the same. I've read that Protandim is very helpful for MS. Has anyone experienced any changes (+ or -) with Protandim? My neurologist recommended for me to continue with Tecfidera and not try Protandim. I've read only negative comments on Tecfidera. I also mentioned this to my neurologist and told me to ignore these comments and to stop reading them. I'm really freaking out because I don't want to get worse like I did with Gilenya. Can someone let me know how they did? Thank you Answer: The last sentence of your question suggests that you only want to hear from others who have taken Tecfidera and felt better. There are many patients who report feeling better on Tecfidera; I see them everyday in clinic. But these individuals, almost by definition are not the ones posting on the internet. Let’s talk about this a little bit further. I have personally taken a days worth of Tecfidera once and was intrigued by the flushing, but did not experience any other problems. I have also tried interferons and Copaxone in the past to get a sense of the side effects. You may ask, "Why would an MS specialist without MS take these drugs?" Mostly to know what my patients were experiencing and to put to rest the comments I often hear from patients in clinic such as, “you don’t know what it is like to take these medications?” In fact I could have skipped the whole experiment, because I still don’t know what my patients are feeling when they take these medications; I only know how I felt and this is the whole point of my response. You shouldn’t be asking if someone else felt better on Protandim or Tecfidera or anything else for that matter. I can prescribe someone many different treatments, herbal and synthetic, and if I do so with enough conviction and gravitas, as many as 30 % of these individuals will report they feel better. This is what we call the placebo effect. What you really want to know is whether the treatment you are taking has been studied in multiple, well controlled clinical trials and determined to show a consistent and meaningful benefit with acceptable safety and tolerability. For Tecfidera the answer is a resounding YES. Does this mean it is working in your particular case? Absolutely not. The whole point of MS management today is to set goals for treatment and alter the treatment as early as possible, if these goals are not achieved. The real question you should be asking yourself and your doctor is, “what is our (you and your doctor) goal(s) for treatment with Tecfidera and when will we know that this goal is not being achieved and require an alteration in our treatment plan.” This has nothing to do with anyone else on treatment with Tecfidera. This is all about you and your individual set of problems and concerns. The art of medicine is in helping people frame or interpret their concerns in a way that allows for effective solutions. As for Protandim, I have nothing really to say about this treatment. There are zero published or presented clinical trials in MS patients, well designed or not. In vivo or animal model studies are useless for determining efficacy or safety in MS. The list of treatments found to be useful for animal models of MS is almost endless but few have demonstrated any benefit in humans. The best reason to talk to people about their experience with a treatment is to understand how they handled particular problems or side effects experienced during their time on treatment. For instance, it was a number of patients who told me about eating peanut butter or almond butter with Tecfidera to reduce the gastrointestinal side effects like epigastric pain and nausea. Good luck to you Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi, I am wondering if it is possible to be diagnosed with MS if I only have lesions in my cervical spine? 11.5 months ago I had an attack and had one lesion in my cervical spine, and I also had the other markers/bands (I had pins and needles in my foot which ended up moving my leg, other foot and leg and arm). A few days a go a had weird sensations in my foot, went for another MRI and the old lesion was resolved but I have another lesion on my cervical spine. My brain is completely clear-the doctor says no question about it my brain is excellent. She did diagnose me with MS. I was under the assumption that "space and time" was at least two attacks and in 2 of the 4 areas of the CNS. I know I have the time but I do not think I have the space-unless I am interpreting it wrong. So my very long winded question is can I have MS-do I meet the "space" part? Answer: If your symptoms are consistent with inflammatory demyelination, and it sounds like they were, and there is an unequivocal new lesion in the spinal cord with CSF oligoclonal bands, then MS is a likely diagnosis. I prefer to be descriptive in my diagnostic criteria for the purpose of categorization and consideration of alternative diagnoses over time. So for instance, we would define you has follows: Clinically definite MS (CDMS): Relapsing partial transverse myelitis with multifocal cord lesions, normal cranial MRI, CSF oligoclonal bands, negative myelitis workup (assuming workup done) Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I tested positive for JCV antibodies and have an index value of 1.68. Is this considered a high value? I was just in to my neurologist with right side weakness and vision issues and cognitive concerns. She is also sending me for new MRIs. I have never been on Tysabri. Do I have reason to be concerned about PML? Answer: PML is an extraordinarily rare condition but over 50 % of the population test positive on JCV antibody testing. We estimate that 80-90 % of people have been exposed to the JC virus and the virus remains dormant in their body, often in the kidneys. This is harmless. Tysabri may increase your risk of PML after 2 years of treatment but even then the risk is no more than 1%. Unless you are significantly immunosuppressed for some other reason (chemotherapy or HIV infection), you have no reason to be concerned about PML. Your symptoms are likely related to your MS. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My 25 year old son was diagnosed with Relapsing-Remitting MS when he was 22 years old. He had two symptom flare ups prior to being diagnosed. He started an oral medication almost immediately and thankfully has been symptom free. I have a 19 year old daughter (not diagnosed with MS) who is a Div 1 athlete that has inconsistent periods and at times heavy. She has been advised to try a form of birth control to help control her cycle. My concern is that she is a woman and has a sibling diagnosed with MS which puts her at a higher risk of getting MS. And, various articles suggest certain birth control forms can raise women's risk of getting MS. That makes three things that could be triggers for her. Could you suggest the best/safest form of birth control that she could try? And, any other information that could be useful in helping her make a decision. Trying to be pro-active. Thank you for making this site available! Answer: Good question! In general her risk is low to begin with. In general the relative risk associated with birth control is low, but there are none that have been proven to be more or less risky. The one thing that has been shown to lower the risk of MS is to have sufficient blood levels of vitamin D, so taking a supplement and following levels with your physician would be useful. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I have been living with MS for 33 years. About 10 years ago I was also diagnosed with trigeminal neuralgia. This condition is extremely painful. Although I have times of remission it has always returned to haunt me. I currently take Tegretol to help manage my pain. I have had the Gamma Knife procedure years back in hopes of some relief but that was not successful. I am not quite sure if surgery is the way I want to go at this point but would consider if pain becomes unbearable. My question is are there any new treatments out there for this horrific painful condition? Thank you. Answer: Trigeminal Neuralgia associated with Multiple Sclerosis is usually treated with Percutaneous needle ablation procedures or gamma knife radiosurgery if the pain is refractory to medications. Microvascular decompression is rarely the procedure of choice in Multiple Sclerosis patients. For medical treatment, we usually give trials of carbamezipine (or oxcarbezipine) as first line with the addition of gabapentin or pregabalin as needed. Second line treatments include lamotrigine, phenytoin and occasionally baclofen before sending patients to neurosurgery for a percutaneous procedure. Most surgeons do not use microvascular decompression to treatment Trigeminal neuralgia associated with Multiple sclerosis even though it is the preferred procedure for idiopathic (not related to MS) trigeminal neuralgia. I have found that different surgeons have a preference for different types of percutaneous procedures; some still prefer the older glycerol injection while others have a preference for either radiofrequency rhizotomy or balloon compression. All procedures typically cause some degree of facial numbness, at least temporarily, and all procedures, except gamma knife radiosurgery, immediately eliminate or reduce neuralgic pain in more than 90 % of patients. Generally, the recurrence rate for neuralgia after one of these procedures is in the 20-30 % range. Thankfully, patients tend to respond to repeat procedures for recurrent pain. There is a very low rate of analgesia dolorosa (burning pain in an area completely numb to sensation) with all these procedures: Pros and Cons for each procedure are as follows: 1. Microvascular decompression: This is open surgical procedure that require a craniotomy (major surgery). It is the most effective procedure for patients with idiopathic (i.e. not related to MS or another condition) trigeminal neuralgia under the age of 70 but of questionable benefit in patients with Multiple Sclerosis who do not have known vascular compression of the trigeminal nerve root. This is not frequently done in MS patients 2. Gamma Knife radiosurgery: Requires greater than a month after the procedure for any reduction in pain with the lowest rate of effectiveness of all the procedures but also the lowest rate of facial numbness after the procedure: Not generally recommended unless all other procedures are contraindicated, patient has failed prior percutaneous or surgical procedures or patient prefers this approach first to avoid any invasive procedure 3. Percutaneous Glycerol Rhizotomy: The oldest procedure. No anesthesia required and performed quickly. This is a non selective procedure favored by some because of the perception that patients experience less facial numbness post procedure. This procedure is associated with the highest rate of recurrent neuralgia often within 1 1/2 years 4. Percutaneous balloon decompression Rhizotomy: This seems to be the favored, non-selective percutaneous procedure for the past decade. This is a vary rapid procedure with no anesthesia required and an excellent success rate. The recurrence rate within 2 years is relatively high but the procedure is easy to repeat or follow with a different procedure 5. Percutaneous radiofrequency rhizotomy: This is a selective procedure which is excellent for trigeminal neuralgia involving just the second or third division of the trigeminal nerve. Thankfully, more than 90% of patients only have involvement of one or both of these divisions of the nerve. This procedure require more skill and training, requires anesthesia, and takes several hours to perform. It also requires a cooperative patient who can be awakened during the procedure to make sure that correct zone of the ganglion is ablated. Surgeons skilled in this procedure prefer this technique because of the selective ablation of the nerve, the selective degree of facial numbness post procedure and the lower recurrence rate. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Is it safe for my daughter with MS to receive the whooping cough vaccine? I am concerned about whether or not the vaccine contains a live virus. My older daughter is expecting a baby and since we are going to be to be caregivers, her doctor wants us to receive this vaccine. Answer: Both the childhood DTap vaccine and adult Tdap vaccine for whooping cough prevention (a mixed vaccine that also includes Tetanus and Diptheria vaccination, all of which are recommended with the whooping cough vaccine) are inactive and safe for people with MS and their family members. The main contraindications for either vaccine is a serious prior reaction to the vaccine or an unstable neurological condition not well identified and under treatment. Hope this helps Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been taking Tecfidera for three months. I take a stomach protecter, an aspirin too, and take Tecfidera with food, but I still have terrible stomach pain, diarrea and bloating...it is driving me crazy.... Answer: I'd suggest looking at the prior blog about Tecfidera and side effect mitigation (see link below). There is a section about GI side effects. If this is insufficient for your side effects (and you find them unbearable), then you may need to discuss transition to another therapy with your neurologist. http://www.healthcarejourney.com/q--a-for-virtual-ms-center/thoughts-on-tecfidera A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I was in Florida for vacation and was sent to the hospital. The hospital thought I was having a stroke. They admitted me and the doctor on call felt I needed to be admitted as he thought I was too young for a stroke. They did an MRI w/wo contrast and several white matter and lesion that was suspicious. Blood work came back as follows: Glucose - high...EOSINOPHILS - high....MCH low....MCV low.....NEUTROPHILS low.....RBC high.....RDW-CV....high Doctor/Neurologist was positive it was MS. Could this be correct? They did not want to do a spinal tap as they felt it was not necessary. Answer: It is very difficult to comment on your case without further details. I can tell you that anyone who goes to an emergency room with the acute onset of neurological symptoms is considered a “Code Stroke” until they are evaluated. This is done to ensure that all evaluations are completed rapidly in case the person needs acute treatment for a stroke, which can only be administered within 3-6 hours of the onset of symptoms. I suspect the ER personnel called a “code stroke” and following an MRI scan realized the findings were more consistent with MS. This is very common in people under the age of 50, a rare age for a person to experience strokes if they do not have significant risk factors for strokes. Whether a lumbar puncture (LP) or spinal tap is required to establish a diagnosis of MS depends greatly on the circumstances. We can certainly diagnose MS without an LP. In order to have a diagnosis of MS, certain clinically criteria have to be applied which you can read about here (http://www.healthcarejourney.com/physician-blog/the-diagnosis-of-multiple-sclerosis-ms). The current clinical criteria for MS emphasizes the use of MRI over a spinal tap, so this could explain why the doctors you saw didn't feel compelled to do a spinal tap. Once again, I cannot render an opinion on this without more information. I would strongly suggest you follow-up with a MS specialist who knows how to apply the clinical criteria appropriately and who can review your specific situation. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego |
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