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Hi, I am 25 and was officially diagnosed with MS July 2013. ( I have had symptoms since I was 10). The catalyst that sent me to the doctor in 2013 was dizziness and falling (along with numbness.) I am currently relying solely on a wheelchair for mobility (December of 2013 I had been using a cane/walker.) I have had various "second opinions " in my state, and all of the doctors agree that I have a very "aggressive form" of MS, but no one has yet to diagnose me with anything other than RRMS. Many of my symptoms have been slowly progressing for the last 16 years, and I have been repeatedly told that I "don't fit" in a category for the progressive forms of MS while not fitting into RRMS fully either. It's frustrating. Answer: This does sound frustrating. If you are able to travel for further opinions, we may be able to provide you with some options. Let us know where you live currently so we can assist you. You can email us at admin@healthcarejourney.com or go back to where you asked this first question and you can let us know there if you prefer. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
When is A Typical a wrong diagnosis? In November 2013 I had multiple thoracic lesions, plus one TH8-11, and one @ C5 with no optical neuritis. Negative O Bands x 2, negative bloodwork lupus, lyme, NMO, sjogrens, etc...absolutely perfect levels of everything. I was passed from one doctor to another with no treatment for a year. Then in July 2014 I had another MRI enhancing lesion TH7. I was told it was Transverse Myelitis, that the TH7 was a "Picking" of an old lesion, not active disease. It has been 7 months between my first and second MRI, plus new lesions, plus relapses or worsening of symptoms, but no diagnosis and no treatment...Why the reluctance to treat it as MS? Answer: There are many conditions that can cause relapsing myelitis with multiple T2 and gad enhancing lesions at multiple levels in the spinal cord, a normal MRI of the head and no oligoclonal bands. This includes autoimmune myelitis associated with aquaporin-4 or collapsin response-mediator protein-5 [CRMP-5] immunoglobulin [Ig]Gs, or idiopathic recurrent transverse myelitis. Treatment usually is different from standard MS disease modifying therapies and includes, intermittent steroids, sometimes plasma exchange, rituximab, azathioprine and mycophenolate. Discuss alternative diagnoses with your current neurologist and see if you can isolate the most likely diagnosis and initiate appropriate treatment. A second opinion with an MS specialist or Clinical neuroimmunologist may help. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I am a 47 female. A year ago I had some type of attack…numbness , tingling , tremor and muscle contractions. An MRI of my brain and spine was negative. Then that episode resolved but since then I have muscle stiffness. I can't walk up stairs well and have weakness when standing. My feet have tingling at times then feel normal . I can't walk far as I have pins and needles in my legs and feet and my muscles are weak. I am tired all the time and head hurts and has weird sensations. I had another brain MRI and spine 6 months ago which were negative. I have seen two neurologists and all say it isn't MS. My MRIs are negative, Lyme's disease is negative and all blood work normal. I truley believe this is MS. What do you think? Answer: The vast majority of individuals with MS will eventually have abnormalities on MR imaging. Ask your neurologist or PCP for a second opinion to determine the underlying cause of your complaints. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I'm a 50 year old female who was diagnosed with RRMS 10 years ago. I'm finding that as I age I have symptoms pop up and at times it is confusing as to what symptoms may be related to my MS vs. something completely different and unrelated. Two new issues have me wondering which of my providers I should be seeking treatment from. 1.) The past few months I've noticed that if I am on my feet too long my right leg will go numb/tingly. Considering this only happens when I'm on my feet would this most likely be due to a back/sciatica issue vs. my MS? 2.) My right ear has become very painful when I yawn. At no other times does it bother me. My PCP has looked at it and isn't finding anything wrong with the ear itself and suggested if it continues to see treatment from ENT. Could it be possible that the ear issue would be related to my MS? I'd hate to start seeing another provider if there is a possibility that it is just the MS. Thank you so much for your thoughts/suggestions. Answer: You are right. As we age there are more potential problems to consider as a cause of our underlying problems. A good MS specialist should be able to determine if your symptoms are related to MS or should be addressed by another specialist. In your situation both symptoms could potentially be related to MS; consideration of your history, additional questions and an examination will help your MS specialist make a determination Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Answer:
Cold weather typically causes people with MS to experience an increase in spasticity. This can worsen ambulation and discomfort. If this is the case, discuss adjusting your anti spasticity treatment with your MS specialist during the colder months of the year Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have PPMS. I was diagnosed 8 years ago. Three years ago my neurologist put me on Gilenya. I took it for 18 months but had no results positive or negative so I was told to discontinue. Now I am seeing a new neurologist who after one visit wants to change my diagnosis to RRMS so he can prescribe Tecfidera (He also travels and speaks on behalf of the drug company). I am skeptical to begin a new drug for RRMS when I am sure I have PPMS. Any advice on how to speak with my neurologist? Answer: Great question. This is the bind we find ourselves in today with all the medications approved for relapsing MS. The truth of the matter is that very few patients who we see in clinical practice, even those with relapsing remitting MS, would even qualify for the clinical trials that are done to get the drugs approved by the FDA. This means that we are stretching the indication for treatment in many patients and using our professional judgement. There is nothing wrong with this and the regulatory authorities permit this approach to practice. Often this experimentation in every day practice leads to new discoveries such as the use of fumarates (like Tecfidera) for MS. But when you take this approach to treatment it is important to be open with patients about what is known and not known. Generally, all doctors must establish their boundaries for treatment recommendations. For instance, if I saw a woman with optic neuritis associated with good recovery and a virtually normal MRI scan and spinal fluid evaluation, I would not recommend a DMT, but would continue to monitor the patient . Similarly, if I saw a patient with many years of secondary progressive MS who has not benefited from prior DMTs, I may even discontinue therapy depending on the circumstances. The evidence suggests that primary progressive patients do no respond adequately (in a clinically meaningful way) to most disease modifying therapies. One exception seems to be that younger patients (under age 50) with PPMS may respond to rituximab. But until the studies are done we often use available drugs in the hope that patients may benefit. Gilenya is a good case in point for you; when you started on this drug, we did not know the results of the Gilenya primary progressive clinical trial. Now we know there was no benefit. I typically recommend that patients with primary progressive MS participate in clinical trials when they are available to them. This is definitely the best approach to finding meaningful treatments for you or other patients in your circumstance. Discuss this with your doctor or check out available clinical trials at clinicaltrials.gov Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have areas of my body that feel like ice, even when the environment is warm. It often is in the area above my waist band or below waist band of my slacks (not tight slacks), both ankles, & across my shoulders. The areas often feel normal to another person's touch (but sometimes do feel a little cool to them, too) and look normal. I have been to an RN and my circulation in these areas is good. Applying blankets/more clothes/heating pad & changing positions sometimes helps a little, but not much. This has gotten worse the last months. Is there any specific treatments that may help these sensory symptoms? Answer: One of the more common sensations in people with MS is the perception that a part of the body is freezing cold or burning or alternating between the two sensations. We call it, “Freeze/burn”, and it seems to be caused by MS involvement of the central part of the spinal cord. Medications used to treat these abnormal sensations are typically in the anti convulsant class and require a lot of trial and error. The medications most commonly used include gabapentin, lyrica, carbamezipine, and lamotrigine. Hopefully, many of the newer medications under development for neuropathic pain and abnormal sensations will be even more effective and get approved by the FDA in the next few years. Stay tuned Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Would Rituximab, a drug used in NMO spectrum, be helpful in secondary MS? Answer: I believe that rituximab can be beneficial in younger patients with secondary or primary progressive MS, generally those under the age of 50 and especially those with rapid progression and/or evidence of inflammatory activity (new or enlarging T2 lesions or enhancing lesions on MRI). There are very few studies to support this approach to treatment, but many MS specialist share the same opinion from personal experience. The problem is getting it approved by insurance. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
What are the guidelines for taking Adderall for fatigue? I am taking 60mg a day but that is not enough. My doctor has no problem with increasing my dosage to 70mg or 80mg but insurance denied it. All I can find are policies on ADD/ADHD but nothing on fatigue due to MS? Answer: Believe it or not there are no good studies demonstrating that Adderall is beneficial for MS related fatigue. The main problem is that fatigue means different things to different people and requires a detailed approach to evaluation and management. In my experience, people with “brain fog”, processing speed problems, and excessive sleepiness during the day may be the people most likely to benefit from stimulants but you rarely know until the medicine is tried and some will simply not tolerate or benefit from stimulants. Please refer to a blog I wrote on this subject READ MORE To directly answer your question, if I believe that Adderall is a good choice for an individual after an in depth evaluation, I generally do not go beyond a maximum of 60 mg per day (usually 30 mg twice a day). I usually try a sustained release formulation of Adderall or go directly to a sustained release methyphenidate in this circumstance. After you’ve read the blog on fatigue, why not set aside an entire visit with your doctor for an evaluation of your fatigue complaints? Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have MS for years but it hasn't been active. My first flair was 3 years ago when I experienced optic problems and lost vision. I saw my neurologist a few weeks ago and all is fine. I take two Lyrica pills (25mg) in the morning and two at night. How long does this take to work? Also for 2 days I have had a lot of pain in my right leg and arm, pins and needles, and burning sensations. I normally have slight neuro pain for the past two days it has been bad. Should I worry that it is another flair? Answer: It is sometimes difficult to determine if someone is having a Flare or relapse of their MS. The general rule of thumb is the following: Relapses cause negative symptoms: Negative symptoms mean a loss of function such as the time you experienced optic neuritis and lost vision. Loss of function symptoms could include loss of strength in a group of muscles, loss of normal movement in an eye causing double vision, or loss of sensation Recovery from relapses or MS symptoms related to prior scars typically produce positive symptoms: When I say, “positive symptoms” I am NOT implying these symptoms are good for you. "Positive symptoms” refers to the generation of abnormal sensations or movements. These sensations may be tingling, burning, electrical, creepy crawly, itching or a tight band and can be quite annoying. Often there is a mixture of negative and positive symptoms during a relapse but it is the negative symptoms that determine the nature and characteristics of a relapse. Positive symptoms are often worsened by elevated temperatures, infections, some medications, other medical conditions,stress and lack of sleep so you have to manage these problems as well. We use medications like lyrica to reduce or eliminate these abnormal sensations (or positive symptoms) and it sound like it is not doing the trick for you. You can ask your doctor to adjust the dose or consider alternatives such as carbamezipine, oxcarbezipine, lamotrigine, or phenytoin. The Lyrica should have started working by now but you are still on a low dose. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have been experiencing fine motor difficulties for several months now. I feel completely fine otherwise. In addition to starting occupational therapy shortly, I was wondering would transcranial magnetic stimulation be an option? I saw that it increases the chance of seizures. I am on Ampyra which I understand can cause seizures and I have read that transcranial magnetic stimulation can also cause seizures. Will I increase my risk of seizures if I do both? Answer: Transcranial Magnetic Stimulation has been used to augment plasticity in neural networks and enhance recovery of function in various conditions. It does not cause seizures. Good luck. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
MS docs [in my experience] offer no dietary recommendations as there have been no "proven" diets to help MS. But I am surprised by this as this is a disease of inflammation and we know that certain foods such as dairy, are considered inflammatory. I would think that a very aggressive approach to eliminating certain foods if nothing else, would be encouraged. Why is this? Answer: We currently do not have evidence based data supporting the use of certain diets in MS. However, there are very helpful resources that could provide additional information on diet and MS. In general terms, we recommend our patients to avoid trans-fats, smoking and salt, and maximize the ingestion of omega3 fatty acids, vit D rich products (again with little evidence behind that recommendation). Please refer to these links for further information http://www.healthcarejourney.com/q--a-for-virtual-ms-center/the-gut-multiple-sclerosis-interaction http://www.healthcarejourney.com/q--a-for-virtual-ms-center/what-is-your-feeling-about-the-effectiveness-of-diet-based-therapies-such-as-the-ms-swank-diet-gluten-free-diets-etc-as-a-way-to-manage-your-ms-do-you-feel-this-is-an-effective-way-to-control-ms-progression-as-opposed-to-medications-available http://www.healthcarejourney.com/q--a-for-virtual-ms-center/what-diets-are-common-for-people-with-ms http://www.healthcarejourney.com/physician-blog/platform-therapy-for-multiple-sclerosis-5-steps-to-follow Augusto Miravalle, MD Associate Professor of Neurology Vice Chair, Education Director, Neurology Residency Program Faculty Member, Rocky Mountain MS Center University of Colorado Denver School of Medicine Question:
To my absolute horror I had bowel incontinence twice in the last week. I have suffered from IBS for many years. I am 71 and functional with no aids. Is this the beginning of a new MS symptom? Super scary. Suddenly in the middle of a walk, no control. Answer: Bowel dysfunction due to MS tends to manifest mainly as constipation, but some can also experience fecal incontinence (accidents). When a scar of MS involves the part of the nervous system that helps coordinate signaling to the bowels to evacuate (located primarily in the spinal cord--especially the lowest segment), these bowel symptoms emerge. Other contributors to bowel problems that are related to MS include: immobility or sedentary lifestyle, dehydration (ie, avoiding liquids because of bladder problems), poor dietary intake of fiber, and the acknowledgement that many different medications prescribed to treat other MS symptoms can cause bowel dysfunction as a side effect. All the more reason to review your symptoms with the MS specialist. Here is a blog I wrote that goes into further detail as well as management strategies. Hope this helps. http://www.healthcarejourney.com/q--a-for-virtual-ms-center/bowel-problems-and-ms A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center #bowelincontinence #multiplesclerosis Question:
I was diagnosed with RRMS in November, 2014 (I've had it since 2007, but being an athlete kept the MS unknown until November 2014). Since my last exacerbation in January 2015, i have been having spasticity and very strong pain in both legs and feet. I even have to use a walker. I feel very good, but my legs are bothering me a lot. (I have gone to physical therapy a few times, but it gets bad again). Why does this happen? Is spasticity a normal symptom of MS? I also would like to know how does vitamin helps MS? I drink 100,000mg a week of vitamin D (prescribed by my doctor). Will I ever be able to do my exercises again?. Thank You!!!! Answer: In the upper right hand corner of this page (and of every page on the website) you will find a search box. If you type in the topic you are interested in (such as spasticity, vitamins) you will find a wealth of information and many answers to similar questions asked by people with MS. Spasticity is a common symptom of MS, and many things and several things will aggravate spasticity, acting as a “trigger” for spasms. These include:
In your case, I would start with reviewing our pages on spasticity http://www.healthcarejourney.com/spasticityspasmscramps.html which discusses ways to manage it, as well as all the various blogs that have been posted about spasticity http://www.healthcarejourney.com/apps/search?q=spasticity. Then I suggest you make sure that the physical therapist you are seeing has experience with multiple sclerosis. Here is a blog describing the benefits of having a physical therapist who specializes in MS and how to find one http://www.healthcarejourney.com/physical-therapy-blog/does-physicaloccupational-therapy-help-with-symptoms-from-ms Working with a physical therapist who specializes in MS will maximize the likelihood of resuming your exercise routine. In terms of vitamins, you can read all our blogs about vitamins here http://www.healthcarejourney.com/apps/search?q=vitamins A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Here is My Question:
I have MS and was diagnosed in my 30's. I am the mother of four children, the youngest is a set of identical twins. One of the twins was diagnosed with pediatric onset MS at the age of 15, from what I am reading it appears that the other twin has a statistical risk of MS of around 30%. Is that correct? Answer: Yes, you are correct. You can read a previous blog I wrote regarding fraternal twins and the risk of the second twin being diagnosed with MS http://www.healthcarejourney.com/q--a-for-virtual-ms-center/one-twin-has-multiple-sclerosiswhat-are-the-chances-that-the-other-will-too With identical twins, the risk of the second twin being diagnosed is higher than with fraternal twins (5-15% depending on the study read for a fraternal twin vs 30% for an identical twin. Here is a blog written by Revere Kinkel MD that addresses this issue: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/what-is-the-risk-of-passing-ms-to-a-child Please note that this data is based on limited size studies, and the majority of siblings (even twins) do not develop MS, but discussing options with your neurologist is reasonable. If you don't know about it already, you might also want to visit our Pediatric MS page http://www.healthcarejourney.com/pediatric-multiple-sclerosis.html which has a link to the Pediatric Multiple Sclerosis Alliance (PMSA), a non-profit organization for parents and caregivers of children with MS. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center Childrens Medical Center Question:
I was diagnosed with CIDP in November 2013. My doctors continuously check for MS. I can barely walk with a walker. I can bathe myself and my hands are somewhat okay but my feet and legs are almost useless. My question is could the initial infection have been dormant for years? Thanks Answer: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is not caused by an infection. CIDP is a chronic inflammatory disorder of your peripheral nerves that causes predominately demyelination but also axon loss. This distinguishes CIDP from MS which is chronic inflammatory demyelinating disorder of the central nervous system that DOES NOT involve the peripheral nervous system Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
My friend's MS symptoms had been improving until she started Gilenya 4 months ago. Is there any reason to think that Gilenya might be causing the decline? Answer: The role of any of the disease modifying therapies (DMTs), including Gilenya, is to do 3 main things:
Healthcarejourney.com has a wealth of information on various symptoms of MS and practical ways of managing those symptoms as they occur. I'd encourage your friend to browse this information, and then discuss with their specialist. In order for your question to be answered definitively, your friend will need to ask their MS specialist. If the specialist determines that Gilenya is appropriately managing those 3 items mentioned above, then the main issue may be fluctuating symptoms of MS that may require an added, but temporary, treatment plan to address the symptoms. Keep in mind, that it may be simply too early (only 4 months) to determine the effectiveness of Gilenya for your friend. Regardless, symptoms can be managed in the meantime, by your friend's physician. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Question:
Why is NMO sometimes misdiagnosed as MS? How are the two so similar that a patient is originally diagnosed with MS, but years later, the diagnosis is changed to NMO Spectrum Disorder ? Answer: Neuromyelitis optica (NMO), also known as Devic's disease, is an autoimmune disorder in which immune system cells and antibodies mistakenly attack and destroy myelin cells in the optic nerves and the spinal cord. There are several reasons that patients with NMO are often misdiagnosed as Multiple Sclerosis: 1. Both MS and NMO are associated with acute optic nerve and spinal cord involvement. While there are differences, subtle and not so subtle, that can help differentiate the two conditions, there are many times when an initial or subsequent attack of NMO simply appears to be a severe MS relapse. 2. MRI scans of the brain can appear relatively normal in both NMO and early MS, although this is far less common an occurrence with a definite case of MS. 3. Spinal fluid oligoclonal bands may be absent early in the course of MS, and are usually absent in cases of NMO. 4. The antibody test we use to help diagnose NMO (anti-Aquaporin 4 Ig antibodies) is very specific but only has a sensitivity of 65 to 75 %. This means that more than 25 % of people with NMO with have negative results. As you can see, most misdiagnoses occur early in the course of either condition. Therefore, the overriding reason for misdiagnosis is the urge to diagnosis MS too early (before it is possible) and failing to re-evaluate this diagnosis over time. Generally, if an individual has a severe transverse myelopathy or optic neuropathy with incomplete recovery, especially in the setting of longitudinally extensive white matter lesions in the spinal cord or optic nerve, neurologists should consider this a case of NMO until proven otherwise Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Question:
Please explain the neurological exam. Having been to several neurologists I am wondering how the "squeeze my fingers, do you feel this, tell when the vibrations stop" are used to monitor things. Each doctor that I have had did these exams differently. What weight does this exam carry? Answer: The neurological exam is used for two purposes:
The tests you mention partially do both of these. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program |
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