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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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Question:
I have an appointment with my MS specialist but it’s not until sept 4th and the MS hug has been intolerable. It’s been happening every day. Some days the hug feels like I’m going to die for about 5 min to 5 hours and others it is a pain that makes me feel tight and short of breath all day. This times it’s been several days straight. Is there anything to treat this that has fast control? Should I go to the ER? I’m just not sure what to do from here. This is awful :( Answer: Please ask your primary care doctor to prescribe a treatment for this symptom while you wait for your neurological visit in September. I would suggest trying gabapentin first (up to max dose of 900 mg three times a day) and if this is not tolerated or helpful try oxcarbazepine next (up to a maximum dose of 600 mg twice a day) Your Primary care doctor can look up how to start and titrate up the dose. Your pharmacist can explain the potential side effects, but low starting doses of each medication is tolerated by most people. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego
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Here is My Question:
What is the common thinking about the use of Ocrevus in older patients? I’m almost 61 and due to get my first infusion soon. My neurologist, whose idea it was for me to go on Ocrevus in the first place, said he’s not planning to keep me on it for more than a couple of years due to my age. I don’t see the point of even going on Ocrevus then if I’m not going to be allowed to stay on it even if it’s helping me and I can tolerate it. Is long term use of Ocrevus considered unsafe in older people? Or ineffective? What benefit would I get from just a few infusions? I feel too discouraged now to even start it. Should add that I’m secondary progressive with relapses. Answer: If you are indeed in the progressive phase with relapses, then you are a good candidate for this therapy as it is one that has shown the ability to slow down the rate of progressive disability. The argument to treat is rooted in the fact that once the door on the inflammatory phase is closed (ie, no evidence of relapses or changes on the MRI), there is no therapy that has proven able to modify the rate of accumulating disability. The thought that an individual does not require indefinite treatment is based on the same rationale: the inflammatory phase eventually ends for everyone, and when that time comes, there is no real justification for continued exposure to these therapies (as the are currently constituted at the time of this response). The challenge is concluding when that door closes for the individual patient. That’s hard to predict. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am an adult male who has been living with MS for 40 plus years now. I was diagnosed in 1978 with RRMS and have now been told by my Neurologist that I have SPMS. My MRI scans have not changed in 12 years now. In your opinion do you think it is still necessary to continue having an MRI yearly as I am claustrophobic? Thank you. Answer: It is highly unlikely that new inflammatory changes on the MRI will be seen at this stage if the disease. Typically, monitoring clinically with a neurological exam will suffice and tends to be more informative than an MRI in the secondary progressive phase. A. Scott Nielsen MD, MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I’m a 60 yr. old female diagnosed with MS in 2018 after approximately 14 years of symptoms. Doctor thinks I may be secondary progressive or moving into it. Over 20 brain lesions, 3 on spine. Aubagio helped my symptoms but raised my blood pressure. Now doctor suggests Ocrevus but I’m afraid of the risks at my age. I should add I also have Cardiomyopathy and possible afib. Had a relapse a few months ago which doctor isn’t convinced was a relapse (but I know it was). Symptoms: a severe headache 24/7 for 3 weeks; increased balance issues and foot drop, blurry, double vision and a new symptom: sharp stabbing pains in joints and upper arm that came and went. Had what I believe was a relapse last year too. However, an MRI done without contrast recently (to check for a possible TIA I had) showed nothing new. It took a few months for me to get back to my baseline but it does seem at times like I may have slightly progressed since the relapse happened and since I was taken off Aubagio. My question is: Does it sound like I had a relapse to you, and do you think it would be worth the risk for me to try Ocrevus? Doctor is offering nothing else. I’m worried about not being on a DMT, but worried about the risks of Ocrevus too. Don’t know what to do! Answer: The definition of a confirmed relapse of MS includes the following elements: 1. New or worsening neurologic function for >24 hours 2. In the absence of fever or infection 3. Confirmed by an examining neurologist Much of what you mentioned appear to be symptoms you have had before. Fluctuating symptoms of MS are very common in comparison to actual new inflammatory events (or confirmed relapses). This is due to prior damage and scarring in those pathways which have an opportunity to influence nerve signaling at any point of time (regardless of the presence or absence of discrete inflammatory events). Since the MRIs didn't show anything new, it does raise the question if what you've been experiencing and interpreting as a new relapse may in actuality have been fluctuating symptoms from prior scarring. However, I cannot say and would have to defer to your treating (and examining) neurologist. In regards to disease modifying therapy and Ocrevus (which is a b-cell biologic), if you are in fact transitioning into a secondary progressive phase, this medicine does have significant advantages. B-cell biologics have show the ability to mitigate the rate of disability progression while other MS therapies have not. Also, these therapies are targeted (ie, they only influence the b-cell rather than taking a shot-gun approach to the entire immune system). In some respects, this lowers risk, particularly infection risk which has been a problem with other highly effective MS therapies that are not targeted. My experience with b-cell biologics has been favorable in the setting of disease control, tolerance of the medicine among patients, and infectious complications. However, this is a conversation that should be had with your treating neurologist who knows your case of MS and should be able to address any concerns you have about the proposed medicine. If you don't get the answers you are seeking, you may want to get another opinion from a neuro-immunologist that can see you in person, review your history in detail, and make recommendations for you to consider. Hope that helps. A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am 25 pounds overweight. I have lost quite a bit, but these last 25 pounds stuck. With the summer heat, I'm tired and do not want to walk outside in the heat of the summer. I am taking two naps a day, and I have gained 10 pounds. My friend suggested Phentermine. I have taken it before I was diagnosed with MS with good results. I just need something to get me up and away from the fridge. I know it isn't a long term solution, but it would help develop a good habit. My MS is very stable on Rituxan. Healthy eating and exercise are key components to living well with MS. Would phentermine be something that could help? Answer: You have to ask your doctor if phentermine is safe for you, since I know nothing about your individual case. Generally I would not recommend using phentermine. It is better to lock the kitchen after 7 pm and consider adding the 5:2 fasting diet to your other dieting approach; this means 2 days of the week you need to fast for at least 15 hours. In practice most people eat nothing between dinner and lunch the following day to satisfy their day of fasting. I would also recommend, if possible, a buddy system or social network approach. Find people to support you when feel the urge to break your diet. 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:
I have some symptoms that might be related to MS but I’m not sure. For a while I’ve been experiencing dizziness and muscle fatigue/weakness after exercise and also generalized fatigue. My MD ordered a head CT which showed a lesion in my parietal love. I also have A fib and a pacemaker. My MD said the lesion was most likely a small stroke and put me on blood thinners. I asked if the lesion could be MS but she said they can’t determine it unless I have an MRI. It would be difficult for me to have an MRI because of my pacemaker though so she left it at that. She also said the small stroke would not be causing the dizziness and muscle weakness. Is it possible that the brain lesion could be MS? It would be impossible to answer your question without seeing your MRI You should know, however, that dizziness and fatigue associated with exercise could be related to either atrial fibrillation or multiple sclerosis. If these symptoms are caused by MS, it is usually due to problems with the autonomic nervous system. Sometimes it helps to get a Tilt table test and an exercise stress test to determine if there are problems limiting exercise tolerance and safety. Ask your doctor 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:
I was diagnosed with MS 7 years ago. I have been on Tysabri for 3 years and haven’t had any major side affects. I’ve just had blood tests done and my white blood cells are high. The doctor thinks it could be from the Tysabri but also indicated if not from Tysabri it could be leukemia. Should I contact my consultants at the Austin Hospital in Melbourne where I see my neurologist to discuss with them? I'm trying not to get overwhelmed. Answer: It is not uncommon to see elevated white blood counts in patients on Tysabri. The majority of the time, the total white blood count (WBC) will remain less than 15,000, but on occasion we see elevations as high as 20,000. This is a result of the normal mechanism of action of Tysabri and not harmful at all. The type of white blood cells seen on the blood smear include normal white blood cells and some precursor cells. The elevations in total WBC begin as early as a month after the first dose and tend to persist. Some cell types, for instance monocytes, may show continued elevations over the first year. If your WBC elevation has been present since the start of treatment, there is no cause of concern. If your WBC elevation is new or much higher than previously, then you should probably be evaluated by a hematologist. They specialize in disorders of blood cells. Leukemia will cause an elevation of both normal and abnormal blood cell types and is typically very easy to differentiate from the WBC elevations observed in people on Tysabri. If your doctor(s) has a question, I suggest they contact a local MS specialist or call the Biogen Medical Liaison Office. Let us know what you learn. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego We have received and answered many questions about laser hair removal. READ MORE
Question:
I was diagnosed with MS 4 years ago and had gotten tattoos before the diagnosis. Is it safe to get a tattoo now? I lost my beloved pet of 16 years and would like to get a memorial of his name on my calf. Answer: We have had many questions about tattoos. Please see this link to see all the questions and answers regarding tattoos. READ MORE Here is My Question:
Can you get a tattoo when you have MS? Answer: We know of no problems with modern tattoos in people with MS. Older tattoos (before 1980) sometimes used metallic dyes that could interfere with MRI scans, but this is not the case anymore. 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:
Need help. I have RRMS. I’m currently on Ocrevus, just started in May. I have a question about the MS hug. For me this is my number one horrible symptom. It is debilitating when it happens. It has happened almost daily for quite sometime and it causes me so much pain and difficulty breathing. I am on Magnesium Oxalate 500mg at night with no obvious improvement. All of my labs are normal. I tried Baclofen, flexeril, Xanax and no help. It is unpredictable but mostly mid day when I’m trying to work. I was just prescribed Topiramate ER 25mg to see if it helps. Have you ever heard of improvement with topiramate with this symptom? Have you ever suggested Botox of the intercostals for it and any positive outcome? I’m just out of options and the pain is terrible. Answer: The "MS hug”, an inappropriately affectionate moniker for this annoying symptom, is an illusion of painful constriction sometimes associated with burning or jabbing sensations in a band around the trunk. Sometimes this feels like a tight belt wrapped around you. When it occurs at chest level it gives the illusion that you are short of breath or not able to take a deep enough breath. This band of constriction usually occurs at the dermatome level associated with a spinal cord MS lesion, although we occasionally can not visualize an abnormality at this level on MRI scanning. Treatment for this symptoms is at times difficult. The usual sequence of symptomatic treatments includes the following list in this order:
If the MS Hug occurs acutely (not a chronic symptom), it sometimes responds to high dose iv steroid treatment. We rarely find any benefit from the medications mentioned in your question. Some doctors report success with topiramate but I have been disappointed with its benefits for this indication. 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:
Is it true that the older we become the fewer relapses we have? Answer: It is true that the frequency of relapses is inversely related to age; in other words, the older you become the fewer the relapses even without 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:
Can Copaxone cause cancer? Answer: There is no evidence that Copaxone can cause cancer 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:
When are periventricular and juxtacortical lesions on the same brain mri non-specific and NOT consistent with MS? Is it possible these could be normal in a healthy person in 40s? Also, do the healthcarejourney.com doctors still read mris if individuals would like a second read? Thanks in advance for your answers. Answer: No MRI pattern is 100% specific for MS; this is why we can not and do not diagnose even young people with MS when an MRI obtained for another reason shows findings that look like classic MS. The actual risk of these individuals developing MS is only 30%. 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:
Is it dangerous to take iron supplements if you fear I may have MS? I was diagnosed with low iron, scared to take my supplement. Please help!! Answer: There is no problem taking an iron supplement regardless of the presence or absence of MS. Follow the instructions of your physician. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente There are many different Herpes Viruses (all DNA viruses) that are implicated in many different diseases:
Many Herpes viruses including Herpes Simplex may also be associated with reactivation of the disease and relapses. This presumably occurs when the virus starts actively replicating and triggers and immune response that triggers inflammation in the brain and spinal cord. Hope this helps. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego AnswerHere is my question:
What do I do if my new insurance won't approve Rituxan or Ocrevus? I've been on Rituxan for 3 years and I am doing well on MRI. I am losing my insurance because I am quitting my job. It is just too much for me to work anymore (I only work a couple of hours per week, so I cannot reduce more than that). I am going on my spouse's health insurance plan, but that plan plainly states it will not cover Ocrevus. It will only cover Rituxan after failing two other drugs first. I am afraid of what failure looks like with the amount of lesions and locations of them. What would you prescribe your patients? What do I do? Answer: It is hard to completely answer your question without knowing a little more about your condition. First of all, if you have progressive MS there are no other drugs approved other than anti CD20 agents such as Ocrevus or rituximab. Therefore, insurance really can not deny coverage in this circumstance unless you are too disabled (wheelchair bound) or too old (over 65). If you have relapsing MS, use of the anti-CD20 agents is discretionary by insurance companies. Here are my thoughts in this situation: First things first: if you've been receiving rituximab every 6 months for 3 years, it is likely that the benefits of this treatment will last for several years without requiring any further treatments. There is no evidence that either rituximab or Ocrelizumab needs to be administered every 6 months indefinitely. In fact there is good evidence that the effect of a single treatment lasts more than a year. This means you can relax for the time being. What you need to do is get your neurologist to monitor your condition with yearly MRIs and regular visits to determine if there is any evidence of worsening function. Your neurologist can also monitor your CD19 blood counts. This will determine when the effects of rituximab are wearing off. Normally, your CD19 count is approximately 10 to 15 % of your total lymphocyte count. Following a single infusion of rituximab or Ocrelizumab at standard doses, CD19 counts in the blood remain very low or undetectable for 6 to 18 months. After repeated infusions of rituximab every 6 months (for 3 years in your case) the counts will sometimes remain low for more than 18 months. Since the main effect of rituximab is to deplete (kill off) the CD19 positive lymphocytes in your blood stream, this is a pretty good marker of drug effect. Interestingly, in MS patients the activity of your MS does not tend to return when the CD19 count normalize in your blood stream. This may be a result of prolonged beneficial effects of treatment on immune regulation. If you do need another treatment with rituximab anytime soon, we can provide your doctor with a draft letter of medical necessity that is often helpful during peer to peer negotiations. 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:
Are Patients with MS More Susceptible to Increased Levels of Chronic Pain? I have had MS for a few years and I have noticed that since the disease first manifested, I have experienced chronic, unremitting pain that is out of proportion to the original injuries. Before this, I had a very high pain tolerance and never needed pain medication or ibuprofen beyond a couple of days after being injured or having surgery. For example: Since I have developed MS, I have had shingles along my trigeminal nerve and developed bilateral sciatica due to foraminal stenosis (no cord involvement). Doctors have assumed that, due to my age (early 30’s) I would have a relatively uneventful recovery from both. This is not the case. It’s as if the pain signals have been switched on permanently. Neither of these conditions were caused by MS, but I am wondering if having MS makes us more susceptible to something like a central pain syndrome even with injuries sustained outside of the CNS. Could it be caused by sub-clinical damage to the tracts within the CNS that regulate pain, even if no lesions appear in those areas on MRI? Answer: Your question and observations are extremely astute. MS specialists have observed for years that MS patients experience pain differently and chronic pain in MS patients modifies pain thresholds and responses to other non MS related conditions and injuries. The best approach is to work on modifiable risk factors for chronic pain. This includes doing the following:
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:
Is it safe to inject Botox for wrinkle removal/ cosmetic reasons for MS patient? Answer: Yes this will not affect your MS unless they accidentally give you two much botox 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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