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I have 5 members in my family including my sibling that have been diagnosed with MS, I have several symptoms and they have gotten worse over the past 5 years such as, painful, severe, frequent muscle spasms (no less than 10 per hour that jump all over my body, similar to what you would see with an ALS patient), electric or crawling feeling through my body, memory loss/confusion, numbness and tingling in all extremities that come and go, loss of balance, double vision, troubles swallowing, small nerve fiber neuropathy, difficulty speaking and remembering words. My EMG studies have come back abnormal and 2 1/2 years ago my MRI of neck and brain as well as spinal tap came back normal. Is it possible to have lesions lower in the spine that would not have been caught on the brain and neck MRI that could be diagnosed as MS even with a normal spinal tap? Answer: People with MS do not experience small fiber neuropathies or any form of sensory neuropathy. Remember, MS is a disease of the central nervous system and neuropathies, by definition, are diseases of the peripheral nervous system. It is certainly possible to have "lesions" in the thoracic spinal cord and not see lesions in the brain or cervical spinal cord in people with MS but it would be rare after 5 years of symptoms Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego
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My first relapse was after the first insert of a copper IUD. My MRI showed results that suggested I may have had MS for quite some time and not known about it (no symptoms). Is it possible the copper IUD caused my relapse? It was literally within days after putting it in. Answer: The Guidelines for use of medical contraceptives in MS published in 2016 lists copper and hormonal IUDs as safe and effective in all categories of women with MS. There are no studies showing an increased risk of relapses with copper IUDs. There is one study by the New York State Consortium of MS Centers that even suggested that copper IUDs delayed the onset of MS symptoms. This later study would require larger confirmatory studies before we would consider the information validated. Hope this information helps you. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Hello. I am a 24 year old female. I was diagnosed with MS in 2013. I just found out from my new Neuro that my JCV level is 1.45. I also have lesions on my brain and a C5 lesion in my spinal cord. I used Gilenya a few years ago but stopped due to personal reasons. My Neuro wants me to start taking Ocrevus ASAP but I am concerned because of me testing JCV positive. I fear I will develop PML. Answer: Three MS disease modifying therapies have been directly linked to PML. The highest risk is associated with Tysabri. The DMT with the second highest risk is Fingolimod (Gilenya) followed by Tecfidera. To my knowledge there has only been one de novo case of PML in an elderly (over 70 year old) MS patient on Ocrevus. As I have discussed previously, we have good mitigation strategies for the prevention of PML with natalizumab and tecfidera. For all DMTs associated with PML, I personally feel one of best mitigation strategies is to avoid using them in elderly patients (over 65). This certainly applies to the use of Ocrevus. Revere P (Rip) Kinkel, MDProfessor 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. Here is My Question:
For the past 7 years I've been on Tysabri every 4 weeks but my neurologist decided to change it to 6 weekly infusions much to my disgust 😥 and I don't feel the same. I'm more tired and I'm weaker and my head is constantly sore. HELP Answer: There are several good reasons to switch an individual on Tysabri to every 6 week infusions after a year or more of stability on every 4 week infusions. These reasons include the following:
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Can I take iron supplements during pregnancy to keep my blood pressure from dropping low and to avoid dizziness? Answer: For the most part, taking Iron supplements during pregnancy is safe. You need at least 27 mg of iron, but try not to get more than 45 mg each day during your pregnancy or while breastfeeding. However, iron might not influence your blood pressure and symptoms as you are anticipating. I recommend you discuss with your primary care physician or ob/gyn these symptoms. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine 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. Here is My Question:
Is burning lips a sign of MS? Answer: Burning sensations—or paresthesias—can be a sign of MS, but also can be due to a number of causes and some are completely benign. Proper evaluation by your doctor should help distinguish these in your case. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
For the past few years, I have suffered from pain on my left side. I have had several recurring dreams where I am diagnosed with MS. I am typically in pain most of the time, my hands tremble, and I notice I am dropping things more. Is it worth me making an appointment with my local doctor to talk about this? Answer: Absolutely, you should discuss with your neurologist these symptoms. As usual, it is helpful to come prepared to your visit with a diary of symptoms and updated list of medications. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine Here is My Question:
I just started taking Tecfidera today. I took it around 11 am, and made sure to eat healthy fats with it (my doctor recommended this). I was fine up until 3:30-3:45, and then the flushing kicked in. I was wondering if eating certain foods may cause flushing? I know this is a side effect of the medication, but I ate some spicy chili at 3, and then the flushing started. I was fine all day up until then. Other than that I've had no other side effects (cross my fingers). Answer: Flushing is a common side effect of Tecfidera. Clinical trials 36% of people taking dimethyl fumarate reported experiencing flushing and 42% reported gastrointestinal (GI) upset such as nausea, vomiting, abdominal pain or diarrhoea. These side effects tend to occur in the first month or so of treatment before easing off, however they can be troublesome to deal with and it is known that experiencing these symptoms can affect how many people stay using treatment. If side effects such flushing or GI upset can be effectively managed then it is likely more people will continue dimethyl fumarate treatment and benefit from its disease modifying effects.The suggested strategies to reduce the impact and severity of flushing and GI upset include:
Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine Here is My Question:
Will I have to be on MS treatment for the rest of my life to avoid worsening conditions? Answer: Disease modifying therapies for MS are considered to be a life long commitment, however, there are studies evaluating the possibility of treatment discontinuation after the age of 65. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine Here is My Question:
I have read that MS decreases life expectancy by 7 years (on average). Is this true? What is the min.-max. years life expectancy? Why? Answer: The disease is highly variable. Life expectancy for people with MS has increased considerably in the last 20 to 25 years. According to the National MS Society, on average, an MS patient lives about five to seven years fewer than someone in the general public, largely because of disease complications or other medical conditions, like cardiovascular disease. Only rarely does the disease progress so quickly that it is deadly. Due to advances in medications and treatments, care, and lifestyle adjustments, MS often progresses slowly. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine Here is My Question:
Does Ocrevus help relieve pain? Answer: No, the medication is only intended to help with disease progression, but is not intended to help with symptoms. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine Here is My Question:
What diseases/viruses am I susceptible to while taking MS treatment? Answer: The answer to this question depends on the medication under consideration. Risk profile varies between medicines with different mechanisms of action. Entering the MS medicine you wish to research in the search field will pull up blog posts with the information requested. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I had an MRI on my brain and was told that I have active spots of inflammation and spots of previous inflammation. Because I do not have previous MRIs, there is no way to tell how severe/ how long ago those episodes were. How can I find out how far along I am in the disease or how severe my case of MS is? Is there a way to tell how close/ the likelihood of paralysis or severe disability? Answer: The gauge of disability for MS is the EDSS scale that ranges from no disability (0) to essentially bedridden (9.5). Your score on this scale is primarily based on your neurological examination performed by your neurologist. MS is unpredictable and can be very different between patients, even those in the same family. The question that should be considered is what is the most appropriate disease modifying therapy for me? All of these therapies are preventative rather than reparative or restorative. When there are signs of active disease (as in your case) a serious conversation with your neurologist should focus on answering that question. Preventing disability requires appropriate and timely treatment to mitigate problems in years to come. While it would be interesting to know exactly how far along an individual’s disease course is or when it exactly started, those answers won’t change the “what can I do about this?” Simply put, if you are in the inflammatory stage of MS, you should strongly consider treating it before the window to do so closes. A.Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I have MS and a Mirena IUD. The last few hours my uterus has felt like a water balloon and I can "feel the water sloshing around". Over the last hour or so its gotten worse to the point where I feel like it's going to "fall out". What can I do to help this go away short of giving myself a hysterectomy? (Side note: kidding on the hysterectomy). Answer: I have to admit, this symptom is a new one for me! I’m assuming you have had a recent gynecological exam since your symptoms started? If not, that should be reviewed first with your PCP or OB Gyn Doctor. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Can we get rid of our multiple sclerosis symptoms permanently or do they always come back?6/10/2020 Question:
Can we get rid of all our symptoms permanently or they always come back? During a UTI do our symptoms intensity for MS? Answer: What a great question! Let's think about what causes MS symptoms to help you understand the answer better. Broadly speaking symptoms occur either as part of the disease process or the reaction of your nervous system to the disease process. The disease process:
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have been on Tysabri for a little over 2 years and now my white blood cell count and thyroid levels are low what does this mean? Answer: A low white blood count (WBC) on Tysabri treatment is very rare and likely indicates an underlying medical issue. Tysabri normally elevates the WBC. Both hypo and hyperthyroidism (an underactive or overactive thyroid gland, respectively) can affect the WBC, but this is especially true of an individual with hypothyroidism. Ask your doctor to refer you to a endocrinologist. They may also refer you to a hematologist if your thyroid is not the explanation. Good luck Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
My wife has PPMS. Her biggest issue is a weak right leg. However in warm weather, she develops excruciating pain in her 4th toe of the weak leg. As soon as the temps go back down, the pain subsides. Any idea how to deal with this? Answer: For the sake of brevity, I will assume the pain in the 4th toe that emerges in warm weather is neuropathic pain; This type of pain typically has a burning or alternately freezing and burning quality often with a vague deep aching sensation. It can also be provoked by light touch or stimuli that are not usually painful. We have two basic approaches to this type of problem and they are not mutually exclusive (meaning both approaches may be required). The first approach is core cooling by the use of cooling vests, hats, and collars. There is a wealth of on line information available on cooling garments and the MS Association of America (MSAA) has a free cooling vest program. It is also useful to lower the room temperature and room humidity with air conditioning but I am sure you've already thought of this solution. If temperature control is not effective or impractical, locally applying a lidocaine patch to the affected area 12 hours a day can alleviate this problem, especially when the area of involvement is this localized. Ask your doctor about lidocaine patches. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Benign MS refers to people with milder forms of the disease than the majority of people with MS. The concept remains controversial for a number of reasons. These include the following:
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
What if I'm having severe issues with outbursts of yelling and then crying when I am not feeling heard about my symptoms of memory loss, speech, reading and handwriting issues. Answer: Psuedobulbar affect or PBA results from a damage to certain parts of the nervous system that lowers the threshold for expressing emotions such as laughing or crying . There are certain key features that distinguish PBA for other forms of labile mood.
It is important to different PBA from mood congruent emotional outbursts that are usually not as pervasive as PBA. These labile mood disorders are often associated with psychiatric conditions and personality disorders and are often associated with dramatic changes in opinions and feelings. Revere P (Rip) Kinkel, MDProfessor 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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