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Here is My Question:
I am wondering if I might have MS. I've had tingling sensations for over 2 months. Some days no symptoms then many days in a row of symptoms. Symptoms seem to go away at night. Brain MRI was negative. No other symptoms. I am 63 and female. Answer: It is very very unlikely that a 63 year old woman with tingling (what we call paresthesia) and a normal MRI scan has MS. Time for your neurologist to find another explanation. There are many many causes, most benign, of tingling. 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:
Is the anesthesia I'm feeling on the whole left side of my body permanent right after a relapse? Or can it go away? Answer: Anesthesia, meaning total lack of sensation and awareness involving the whole body or just one side, is very rare in MS. Most people with MS have diminished sensation but not absent sensation. If sensation were absent you could cut off a limb and the person would not feel it. As for diminished sensation, this can take up to 6 to 12 months to recover. Generally, if symptoms are still present after a year, they do not tend to recover further. 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 had symptoms of MS for the last 3 years. I received the wrong diagnosis 3 years ago. The rheumatologist said it was fibromyalgia which it wasn't. In May 2017 my MRI showed one lesion on the juxtacortucal frontal opercula but my neurologist couldn't make a diagnosis based on this. I have pins and needles, burning limbs, numbness in my hands and feet, facial numbness and pain mostly in my upper jaw and pressure behind my eyeball. Vision has decreased but it's still ok. I'm tired and it is the worst in the afternoon. My body is in pain but only my left side is affected. I'm going for another brain MRI on May 25 2018. My neurologist said he could not rule out MS at the moment, now he seems to think that it could be CIS remitting relapse which makes sense after telling me last year it was not MS at 100%.Please help!!! Answer: Making a diagnosis of MS remains complicated, even in the era of high field MRI scanners. The good news is that people with minimal MRI involvement and no atrophy early in the course of the disease tend to have a more benign prognosis. I assume the MRI of your spine did not show evidence of MS. If an MRI of the spine has not been done this is your next step. Certainly you can repeat MRI scans every 6 to 12 months to help establish a diagnosis, but it is sometime useful to obtain a sample of spinal fluid and do visual evoked potentials when the MRI evidence of MS is minimal. Talk to your neurologist about these tests. 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:
In my MRI report from 6 years ago, it said I had encephalomalacia - pen point sized- in the pons (I had a severe flare in 2007 via large lesion in brainstem). Would dead tissue that size, in that area, cause disability/dysfunction? If so, what would be affected? Thank you! This is difficult to answer for a couple reasons...
The bottom line is that MRI isn’t a perfect biomarker of MS—nothing is. However, the MRI is very important in confirming the diagnosis but also plays a critical role in evaluating the effectiveness of MS disease modifying therapies in the individual patient. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Don't you have to have issues with your lumbar space for MS to affect walking and cause nerve pain?5/14/2018
Question:
I have 9 brain lesions and none on my spine, however I have multiple disc herniations in my cervical spine, yet I have trouble walking. I am really slow and have terrible pain in my feet. I thought you had to have issues with your lumbar space be for this disease to affect walking and cause nerve pain in my feet. Is this incorrect? Can you explain. Answer: Any problem affecting the spinal cord in any location can cause walking problems and abnormal sensation in the feet. Remember, all the fiber tracts passing to and from the lower part of your spinal cord (the region controlling your legs and feet) to the brain must first pass through the entire spinal cord where MS or another process can cause a malfunction in the signals being transmitted that you perceive as weakness and sensory alterations with pain. A problem in the lower part of your spinal cord (thoracic, lumbar or sacral region) will only affect the legs and leave the arms and hands alone, since the cervical spinal cord (the upper most part of the spine) controls all function in the upper extremities. Hope this helps. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
So my daughter has been on Gilenya for 6 weeks now and she’s experiencing chest pain which sent us to cardio doctor who said her heart was all good and healthy but she has chest wall inflammation out of the blue, no trauma or injury, pain and squeezing come and go and last for seconds to minutes, could this be an MS hug? Or is this just a random thing and not MS related? The new thing in her life is the Gilenya. Answer: A sensation of a tight band wrapped around your chest with a squeezing sensation is common in MS patients and does not represent, “chest wall inflammation.” MS patients call this the, “MS Hug." Chest wall inflammation usually cause pain on taking a breath or coughing. Gilenya can affect your breathing, especially in those with obstructive lung disease (asthma and COPD), but chest wall inflammation was not observed in human trials, despite observing chest wall inflammation in a number of non human species during pre-human clinical trials. You may need to see a pulmonary doctor to figure this out, not a cardiologist. My bet is that she is experiencing the, "MS Hug.” She may need to stop the Gilenya for a few weeks to determine if the drug is at all related to this new symptom, but she should only do this under the direction of her MS specialist. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I've been numb from the waist down for almost 2 years. Over the last 3 or 4 days, I've noticed that walking feels like I'm wading through water. Nothing noticeable with my gait (no foot drop or limp), but after about 10 steps, my quadriceps are exhausted. I can push through and force myself to continue, but it wipes me out. Grocery shopping, which normally has been very enjoyable, is very taxing. I'm not sleepy, but my body (mainly my legs) are done. Aside from (many) brain lesions, as of 2016 I have C2, C6, T3, and T4 lesions, but they were on the side of the spinal cord that effects sensation, not motor function, if I recall correctly. Is this progression? A new symptom? Or just MS being MS? Answer: The fatigue with exertion you describe is very common in MS and can come and go. If it is unseasonably warm where you live, this could be the cause. You should definitely get re-evaluated by your MS specialist and have him or her look for other causes such as a thyroid disorder (common in MS), an asymptomatic urinary tract infection (also common in MS) or another cause. If there is no noticeable change on exam and no obvious cause, you may benefit from 4 aminopyridine (brand name Ampyra). This does not, in and of itself, mean you are progressing. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I have severe lower extremity spasticity & having intercourse is near impossible. I still walk with a walker short distances but my legs need bending when changing position. I’ve tried every medication and get full doses of Botox in my quads every 4 months- I can look after own peri care but sex isn’t happening- is there anything else I can do! Oh and I tried Cannabis with limited response. Is there a medication that could make me floppy for a bit and yet not loopy and weak? Oh and I am a woman in a happy marriage and only 55- I also understand there are other options but wanted to know if there was anything else? I react in spasm to showers so touch is not always easy. Answer: The best option for controlling severe spasticity and spasms in the lower extremities is an intrathecal baclofen pump (intrathecal means administered into the spinal fluid). This baclofen is administered in a liquid form by a small programmable pump implanted under the skin attached to a small catheter tunneled under the skin around to your back where it is threaded into your spinal fluid space. The liquid baclofen bathing the spinal cord will reduce or eliminate all spasticity and spasms depending on the infusion rate. The rate can even be changed throughout the day to adjust to your needs. I would definitely look into this treatment for your degree of spasticity. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I've been on Copoxane since Jan 2018. Just wondering if the pains in my legs coming from the injections or the MS? Answer: I suspect, without even knowing the type of pain you are experiencing in your legs, that the pain in your legs is not due to copaxone. I would need to know more to determine the cause of the pain. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I began my first half-dose of Ocrevus last July...second half in August. I am 70 years old. At the end of January (2018), I had my first full dose of Ocrevus. Without eating any differently than before, I immediately and quickly gained weight. I honestly feel the Ocrevus has something to do with this and am upset. How many have written with the same concerns? Answer: I have never heard of anyone gaining weight on Ocrevus and I can not imagine a mechanism whereby this medication could cause weight gain. Perhaps they gave you a bunch of steroids with the Ocrevus infusions? Steroids can certainly cause weight gain. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego I am 21 years old and have had MS for 3 years. Optic neuritis was my first symptom. I was on Aubagio for 2 years and was all set but last month I suffered an anal abscess which was surgically drained but I stopped my Aubagio medicine because I think there is a correlation between Aubagio and my abscess formation. Kindly advise me on whether I should continue with my Aubagio or is their other medicines for MS I should consider.
Answer: Clinical trials did not show an increased risk of infection on Aubagio. Therefore, unless the Aubagio decreased the function or number of your white blood cells (something that can be checked by your doctor) or you’ve noticed an increased frequency of infections since starting Aubagio, I see no reason to stop Aubagio based on a common infection occurring after 2 years of treatment. Please ask your MS specialist to clarify his or her reasoning. Good Luck 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. Question:
If a person has AFIB and takes a beta blocker and one of the new blood thinners, is it safe to try Ocrevus? Answer: There are no interactions of concern between any of the blood thinners or beta blockers and Ocrevus Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I am interested in starting to diffuse essential oils but don’t want to stimulate an already overactive / confused immune system - what are your thoughts? Anything that one should stay away from? I live in a state where marijuana is illegal even for medicinal purposes - so I am looking for other alternatives to combine with my DMT. Answer: I see no risk in apply essential oils judiciously and with the correct dilution. If you have concern about a particular essential oil, consult an aromatherapist. 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:
Tell me more about Tumefactive MS Answer: Nausea, vomiting, and hiccups can occur if MS affects the area postrema (upper spinal cord/lower brain stem). This area can be preferentially affected by a mimicker disease such as NMO. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is Tecfidera 120 mg effective as a maintenance dose? I was diagnosed with RRMS two years ago and have been on Tecfidera since. It appears that the drug is doing a good job controlling my disease; I have not had any new attacks and my MRI results have been stable. However, I began experiencing hair loss about 3 months into the start of the medication, which has continued for almost two years now. My hair is now visibly thin. Other causes of hair loss were investigated and eliminated. My neurologist suggests halving the Tecfidera dose to 120 mg/twice a day and having an MRI done in 3 months. Is Tecfidera 120 mg effective as a maintenance dose? Will halving the dose help with my hair loss? Thank you Answer: 120mg dosing is off label. The plan to check the MRI at 3 months is likely to screen for asymptomatic disease activity on the lower off label dosing. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente MS risk might increase if Vitamin D deficient and exposed to Epstein Barr at a certain age5/10/2018
Here is My Question:
Has anyone investigated the idea that all people have the gene(s) for MS, in family history there is a mutation and when exposed to EBV or toxic mold then gets MS. Or mutation is recessive gene, takes both parents to carry that gene - both parents give child recessive gene and child then expresses gene as dominant and MS when exposed to virus etc. ensues. Answer: Most evidence relative to the risk of MS suggests that there are individuals with genetic predispositions, that if they are vitamin D deficient and exposed to Epstein barr at a certain age, then their risk of MS goes up! The exposure and genetics are not the only issue – timing and circumstance matters. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Strategic Initiatives Cain Denius Scholar of Mobility Disorders Distinguished Teaching Professor Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Medical Center Dallas, Texas Here is My Question:
Can someone tell me about blood test vs spinal tap for neurofilament light chain levels (NF-L) and their use in showing brain atrophy in MS patients? Thank You Answer: There is very exciting research about neurofilament light chain as a potential biomarker for neurologic injury. The studies are all research only at this point and it is not yet available in clinics, but stay tuned Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Strategic Initiatives Cain Denius Scholar of Mobility Disorders Distinguished Teaching Professor Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Medical Center Dallas, Texas Here is My Question:
Does the level you are JC + at increase risk of PML? I am at a 3.19. My medication options are Copaxone or Tecfidera. Would it still be safe for me to take Tecfidera or too risky? Thank you. Answer: The JC virus antibody index level can be helpful in estimating risk for PML for patients on Tysabri. Retrospective data analysis suggest the higher the index level, the greater the risk for PML when exposed to Tysabri (as well as ~6 months after tysabri discontinuation). We do not have the same breadth of data for the association of JC virus antibody status and index level with tecfidera. While it makes sense that a positive test with higher index level would confer a higher PML risk on tecfidera (since there are reported cases of tecfidera associated PML cases), there simply isn’t enough data to use the lab test the same way we use it for tysabri. Another reason it may not be a good idea to establish an equivalence in lab interpretation between these two drugs is that their mechanism of action differ significantly which may influence the risk for PML based on that fact alone. With several therapy options (both FDA approved and off label use), you may have more options than the two you listed. I’d suggest reviewing these with your prescribing physician. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Could having a low WBC count from being on Gilenya lead to a false test for lyme disease? Answer: It is unlikely that a low white blood count (WBC) from Gilenya would cause either a false positive or false negative Lyme test or any other antibody test. False positive results can occur if a patient is treated with intravenous immunoglobulin within the past 4 months (half life for intravenous immunoglobulin is 3 to 4 weeks) False negative results can occur in a patient who is immunoglobulin deficient; technically, this is not a "false negative" result because the patient is truly not making the specified antibodies This is true for almost any test in which specific antibodies are being measured. 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 |
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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