Question:
I have had Crohn's Disease for about 25 years resulting in surgery with stoma. Since then I have notice that I have had very heavy legs for all these years. Then about 5 years ago, with the drop of my vitamin D, I had numbness in my feet, hand, and shocking toes that started mildly increasing to hard shocks. I went to a neurologist for testing, who then sent me to a MS Specialist. My brain scan showed a lesion, VEP vision test showed optic neuritis, biopsy on my legs shows small fiber neuropathy. Today my legs have increased in the heavy feeling making walking hard to do. Yet only one lesion was noted on my brain. Spine MRI was ok. My question is the heaviness I felt from my legs for years was that the beginning of the MS or the beginning of Neuropathy?

Answer:
Inflammatory bowel diseases of all types, including Crohn’s disease, are occasionally associated with neurological problems including various types of peripheral neuropathies. Multiple Sclerosis is also associated with inflammatory bowel diseases at a rate that exceeds the chance occurrence of these disorders in the general population.  Sometimes there is only minimal evidence of inflammatory demyelination in the nervous system of Crohn’s patient; this minimal evidence may include non-specific white matter lesions without any other findings suggestive of MS. Many of these people with minimal evidence of MS will never develop symptoms that can be attributed to MS. This can create difficulty when we attempt to assign a causal attribution to the many neurological symptoms an individual with inflammatory bowel disease can experience.

Let’s take a closer look at your case: 5 years ago you developed symptoms suggestive of a peripheral neuropathy. Although I do not have access to your examination findings and test results, it sounds like your doctors discovered a peripheral neuropathy that included “small fibers”. These are nerve fibers that transmit sensations of pain and temperature, as well as autonomic function. Although small nerve fibers are not directly involved in motor function, heaviness in the legs is a common complaint in patients with small fiber neuropathy, perhaps because of their underlying condition, neuropathic pain or the autonomic neuropathy. 

There is nothing in your history or evaluation to suggest Multiple Sclerosis except the results from your VEP (visual evoked potentials). These results are hard to interpret since inflammatory bowel diseases can be associated with optic neurpathies as well. By the way, the term “Optic Neuritis” refers to a syndrome of acute inflammation in the optic nerve resulting in acute visual loss and usually eye pain which increases with eye movement.  A VEP does not detect Optic Neuritis; a VEP can only detect abnormal electrical conduction in the visual pathways which in turn can be caused by many different disease processes including optic neuritis. 

Similarly, a solitary T2 lesion on MRI is insufficient evidence of MS and can be caused by many, many different problems or just associated with normal aging.

The most important thing to do is make sure you have adequate Vitamin B12 and Copper in your system, as a deficiency of either nutrient can cause similar symptoms

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 want to know if Lemtrada is right for me? Five years ago I was diagnosed with chronic idiopathic optic neuritis related to MS. I've lost most of my vision after multiple bouts of ON most of which occurred in the last 3 years. Each time I loose yet another slice of vision. I have no other MS symptoms, I'm 65 years old. I've not been able to find any data on Lemtrada that directly relates to my situation, making it difficult to make an informed decision. My goal of course is to keep the small amount of vision that I have left. Lemtrada could be right for you and you would need to discuss that with your neurologist.

Lemtrada:
Lemtrada is one of the most potent medications available for treating multiple sclerosis and may help prevent you from having further attacks of optic neuritis.

That being said, you should discuss with your neurologist to make sure you do not have another cause of your optic neuritis as there is another disease called neuromyelitis optica (NMO) that commonly causes repeated attacks of optic neuritis and vision loss; however the treatments for NMO and MS are different.
 
Benjamin Osborne, MD
Associate Professor
Departments of Neurology and Ophthalmology
Georgetown University Hospital

Here is My Question:
I am in the military and I am search of info in regards to NMO. The military does not specifically recognize NMO so I must find an analogous disease to present to them. What disease or illness would be a great analogy to NMO just for the purpose of giving military medical personnel a better understanding.

Answer:
NMO stands for NeuroMyelitis Optica. It is a recognized as a distinct disease entity by ICD-9 and ICD-10 diagnostic criteria. These are federal medicare billing codes, so it is hard to understand why the military would not recognize this diagnosis. As a disease state it is more akin to CNS vasculitis than Multiple Sclerosis. Pathologically NMO is a humorally mediated, autoimmune disease with a pathogenic autoantibody directed against the Aquaporin 4 receptor in over 65 % of cases.

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:
Can I donate plasma?

Answer:
Ultimately, you would need to call the company collecting plasma donations to confirm your eligibility.

Having MS is not a disqualifier; however, some MS treatments may mean you cannot donate.  Some patients on biologic medications for rheumatologic disease (that targets the immune system) have been barred from donation by some repositories.  Chances are you will be able to donate, but you will need to go through an intake exam with the organization collecting the plasma.  Calling ahead and asking this question would be advised.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Question:
Can MS cause scoliosis?

Answer:
Multiple Sclerosis can certainly cause secondary scoliosis (adult onset) to occur over many years, usually in association with degenerative changes (arthritis) in the joints of the spine, associated with asymmetric weakness of the muscles and ligaments supporting the spine. 

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 was diagnosed with MS in January of 2012 after the severe onset of double vision. I was hospitalized for 5 days as they ran tests, including blood work, an MRI, a spinal tap, ultrasound & more. After being released, I went to a neurologist who wanted to do some tests of his own before beginning treatment. He explained that there were O bands found in my spinal fluid and with MS, the band's are only present in the spinal fluid or the blood, not both. However, when the band's were also present in my blood, he said that sometimes it can cross over, leaving me completely bewildered. There were lesions present on my brain as well as my spinal cord as well. Since this time, no one has been able to tell me how this is possible. Can you please give me some insight or possibly where to start? Many thanks! 

Answer:
Oligoclonal bands in the CSF are a hallmark of multiple sclerosis, but are also seen with several inflammatory disorders that affect the nervous system. By definition an Oligoclonal band is an immunoglobulin of a particular specificity that is found in the spinal fluid but is not found in a matching blood sample. This means that the CSF immunoglobulin was made by a clone of plasma cells that resides in the cerebrospinal fluid circulation, but not in the blood circulation. Oligoclonal bands that are present in both the blood and spinal fluid are simply immunoglobulins that have passed from the circulation into the spinal fluid and are therefore not directly related to any ongoing inflammatory condition in the brain.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I was diagnosed with MS three years ago and have been on Tysabri for 2 1/2. My main issue is fatigue - so much so that I am unable to work a full time job...I have been on ProVigil, NuVigil and am currently taking Adderall XR 20 mg 2x a day & Adderall IR 10mg 2x a day...even with proper sleep, diet and exercise, I am exhausted - all of the time. If someone want to go out at 8pm (I am a single 36-year-old with no children), I have to change the time. What can I do?

Answer:
Start by reading the blog I wrote about MS fatigue on the website last year (link attached). Probably the main reason stimulant drugs do not work in many MS patients is that they are trying to treat the wrong thing. It’s similar to picking the wrong antibiotic to treat an infection. Follow the steps outlined in this blog and come back to us with a more detailed description of your fatigue experience. By the way, if you feel excessively sleepy during the day, we do not call this fatigue; we call this excessive daytime sleepiness.

http://www.healthcarejourney.com/physician-blog/mutiple-sclerosis-related-fatigue-its-not-just-the-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:
I know that "pins and needles" feelings is a symptom of MS, but what if it is a very mild sensation of "pins and needles. Can that be a symptom of MS? It feels like more of anoff and on shooting of pins and needles.

Answer:
Pins and needles sensation can be intermittent or persistent, mild or intense. Although these symptoms are common in MS patients, they are not all diagnostic of MS or even very helpful in establishing a diagnosis of MS. This is because pins and needles sensations are common in everyday life (limb falling asleep) and in people with other conditions.
​
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:
Has Tecfidera been used in 16 year old girls?

Answer:
Multiple clinics have used this medication off label (meaning in a fashion not approved by the FDA) in girls under the age of 18.

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 diagnosed with MS in 2006. I had a few minor flare ups that were treated with steroids and other than minor numbness in my fingers and toes I never experienced any lasting damage. I went in for a work up in the Fall of 2015 due to difficulty walking: No new lesions were found and nothing was active. As it turned out I needed a new hip with the good news I began the process of getting my hip replaced.

I got sick (bacterial chest infection) and as anyone with MS knows it can exacerbate your symptoms, only this time they were entirely new. I had another MRI and as it turns out there is an active lesion on my thoracic cord which wasn't there 6 months ago. My question is do I continue on the road to hip replacement or do I wait and what is the criteria for this decision? I would like to get the surgery because my mobility is affected by my hip more than MS ever affected me. 

Answer:
It sounds to me that you are a very good candidate for one of the disease modifying therapies (DMTs), however, I can't tell based on your question if you are currently on a DMT.  All of the DMTs are designed to work on the inflammatory phase of MS, and your new cord lesion is evidence that you remain in this inflammatory phase.  I agree with you that your hip is going to affect your walking; however, the cord lesion can contribute as well (a careful examination by your neurologist will likely help clarify this more). 

​While a hip can be replaced with a more functional prosthetic hip, there is no such option for the brain and spinal cord.  Based on what you have told me in your question, I'd strongly recommend you meet with your neurologist to either discuss 1) starting on a DMT or 2) transitioning from the one you are on to another with a different mechanism of action (assuming that you have been consistent in taking the one you are currently on).  The decision to transition to a different DMT needs to be considered in context of your prior MS disease history.

Some DMTs can theoretically slow down healing after surgery, however, my experience has been that a DMT usually can be continued before and after surgery.  However, this should be carefully considered with your treating neurologist.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I am taking Aubagio now for 6 month. My hair have started shedding. If this is one of the side effects, to what extend is it going to continue? Am I getting bald? 

Also I am experiencing itching here and there. What should I do for that?


Answer:
Hair loss is a side effect for Aubagio.  I believe it is experienced in ~13% of patients on Aubagio and the loss tends to improve with the cycle of the hair follicle. Your hair thinning should stop after 3-6 months and recover. You can read the answer to a similar question here:

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/why-am-i-experiencing-hair-loss

The itching on Aubagio should be evaluated as Aubagio can cause liver problems, and itching can be a manifestation of that.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Question:
Diagnosis two months ago and would like to hear more about my condition and when would I have been probably come down with MS? I'm sure I might have had this back when I was a pre teenager, mother used to yell at me for being clumsy. I'm 62 years old and thought Mother was right now I'm not sure what to think about my diagnosis. Please respond with possible answers.

Answer:
You have not provided us with any details about your condition, so it is very difficult to answer your questions. I can tell you it is very possible you have had MS for many years, if not decades.
Ask your neurologist some of your questions to start and we can try to answer any specific questions you may have concerning your particular set of problems or concerns.
Good Luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Christine Granfield
CEO HealthCare Journey

Question:
I can't understand why most MS sites and ads on TV, including magazines, why they advertise sport related photos and suggesting sports. I am not talking just strength exercises but running marathons, rock climbing etc. I can't even function my daily tasks let alone climb a mountain. My MS is classed as inactive and my mobility is fine yet I would not be able to do marathon runs or any extreme activities. Why do they promote MS as a healthy fit person doing extreme sports when in fact it's the opposite???

Answer:
You ask a very good question. I suspect the actors selected to portray MS patients in advertisements are chosen to create a positive image of the benefits of the pharmaceuticals they sell 

​It is not necessarily bad to create these positive images; try to imagine that you are capable of achieving similar feats as these actors. Believing that you can achieve these goals is the first step.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I have had strange symptoms, but had a MRI done last week and a clear neurlogical exam. Everything has come back normal. I am scared that it could still be MS. I had full head and spine MRI. 

Answer:
I have no idea what you mean by "strange symptoms" or why you should think these symptoms are related to MS. Ask you doctor to explain to you what is causing your symptoms; that is a good place to start. If you are not able to get a good answer,  give us a better description and we will try to help

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
For folks who are JCV positive is Gilenya a less risky option than Rituxan in regards to the risk of PML? I am switching from Tecfidera because of low lymphocyte count.

​Answer:
The risk of PML is low with both Gilenya and Rituximab. However, your risk of PML is elevated because of your low lymphocyte count on Tecfidera. Make sure your lymphocyte count returns to normal before starting something like Gilenya, since Gilenya will also lower your lymphocyte count in a different way making it impossible to know if your lymphocyte count had returned to normal before you started the Gilenya.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego