Here is My Question:
Is it normal to feel like you’re going through the five stages of grief after a diagnosis of RRMS? I feel like I have been stuck in denial since I haven’t had any symptoms since my diagnosis last year. 


Answer:
With any life changing event, it takes time to process the "new normal". MS is no different. Most patients go through a period we call the adjustment reaction which can be experienced many different ways, including denial and grief. Some may have a return back to their normal baseline function after the early diagnosis and feel pretty good. They go about life and ignore or compartmentalize the diagnosis and even start to wonder if the diagnosis was a mistake. This can be dangerous because it leads some to stop seeing their physician or even stop their preventative therapy. 

It's an "out of sight, out of mind" scenario. They effectively are led into a false sense of security. We have learned that MS is unpredictable in the short term, but natural history data paints a fairly clear picture of what occurs in the long run if no action is taken to alter the course of the disease. On the path of the adjustment reaction to the diagnosis of MS, it is important to be vigilant and not get stuck in this phase.

If the adjustment reaction leads to intense anxiety or depression, I would urge patients to discuss this with their physician. Many times, medicine for those symptoms are not necessary, but if protracted, some may need that help temporarily until they get to the other side and leave the adjustment reaction behind.

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

Here is My Question:
I am 37, and just found out I am pregnant with an unplanned blessing. Currently on Lemtrada, had 3 rounds, last one was Nov 2017. Prior to starting Lemtrada I was on Tysabri and went off to have a baby. I had a horrible post-partum relapse at which point my neurologist told me to be done having kids (I have 2). Which leads us to today...I’m about 6 weeks pregnant and I called my neurologist to get his advice and he essentially told me to terminate this pregnancy. Have any of you had success protecting you patients from relapses post pregnancy? This resource is amazing...thank you! 

Answer:
Based on what is provided here I have no idea why termination is being suggested. If the last infusion was over a year ago the drug is long gone from the system. I would make sure to seek a second opinion.

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:
I was just prescribed Humira for RA. I also have RRMS, and have not done well with Tysabri; I was recently put on Rituxumab. My doctor doesn't see a problem with both drugs, but I want to make sure there aren't any interactions. What are your thoughts? 

Answer:
Humira is relatively contraindicated in patients with multiple sclerosis. This should only be used in patients with MS and RA who REQUIRE Humira to control their RA AND their MS is well controlled. 

Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
200 West Arbor Dr
Medical Offices North MC 8687
San Diego, CA 92103

Here is My Question:
In what circumstance would Rituximab be used as a first line therapy?

Answer:
Generally, Rituximab would be considered appropriate as a first line therapy in the same circumstances that Ocrevus would be considered as first line therapy. The difference is that Ocrevus is specifically approved by the FDA for treatment of relapsing and primary progressive MS and easier in most circumstances to get approved by insurance carriers for these indications. The exception is Kaiser Permanente insured patients, where Rituximab is part of their formulary for MS 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:
I currently am on Ocrelizumab. My doctor does no blood work other than CBC and LFT before each dose. They did check for hep b before the first half doses. Are there additional blood tests that should be done while being treated with OCREVUS? 

Answer:
You doctor is doing the minimal amount of blood testing required for people who are already receiving Ocrevus. Many MS specialists do additional testing for the following reasons:

1. Many doctors monitor immunoglobulin levels (IgG, IgM, IgA) before starting treatment and then every 6 to 12 months. A significant number of people on Ocrevus will become deficient in IgM and IgG antibodies with prolonged treatment and this may increase the risk of certain infections, particularly upper respiratory tract infections. These deficiencies can be corrected with immunoglobulin infusions if necessary.

2. Most doctors recommend regular cancer screenings, particular breast and cervical for women and skin for all

3. Some doctors track CD19 blood counts to adjust the interval between infusions, generally lengthening the interval between treatments to hopefully minimize the potential risks of long term treatment. The current recommended treatment interval is every 6 months, but there is some evidence that this interval can be extended if B cell counts (CD19 + cells) remain suppressed 6 months after infusions. This requires considerably more study, before this practice can recommended.

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 am 54 years old and have been diagnosed with MS for10 years though in hindsite I realize I how symptoms for 10 years prior.

My question is about changing to a different DMT after two years on Copaxone. I’m of thin build and have just run out of options for injection sites.

I have for the last 6 years had no activity on my MRI but have slowly progressed, so now my neurologist believes more progressive disease.

I was on Beta seron for three years, Tysabri three years ( jc negative) and Copaxone one for 2 years. My neurologist wants me now to take Tecfidera. I’m conflicted as what to do and if this really is the best path forward. 

Thank you.

Answer:
I’d suggest speaking to your neurologist about one of the b-cell biologics (Ocrevus, rituximab) or possibly siponimod (similar to gilenya).  These therapies have shown ability to slow down the rate of progression (particularly in individuals with signs of recent inflammatory disease activity.

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

Here is My Question:
Does Difan Flex medicine contain cortizone?

Answer:
Difen Flex does not contain cortisone, but rather Diclofenac which is a Non Steroidal Anti Inflammatory medicine.

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

Here is My Question: 
Are hyperintense signals in the subcortical region of brain a sign of MS?? 

Answer:
Hyperintense signals on certain MRI sequences can be seen in MS and a variety of other conditions. To determine if the changes are due to MS depends on the size, shape, location and total pattern seen on a MRI. There are many things that can cause sub cortical changes on a brain MRI other than MS, so the context matters a lot.
 
Benjamin M. Greenberg, MD, MHS, FAAN, FANA, CRND
Vice Chair, Translational Research and Strategic Initiatives
Director, Transverse Myelitis and Neuromyelitis Optica Program
Co-Director, Pediatric CONQUER Program
Department of Neurology and Neurotherapeutics
Department of Pediatrics
UT Southwestern

Queston:
I am 23 and have MS. I have been on Ocrevus for the past year. I have had a flu shot. My understanding is that getting a pneumonia vaccine is safe for people with MS. Is it still safe to get a pneumonia vaccine while on Ocrevus? If so, which should I get, PCV13 or PPSV23 and if both in which sequence? Is it best to get the pneumonia vaccine just before my next infusion or after?

Answer:
It is certainly safe to receive the vaccine, other than the small risk of some allergic reaction.

We do not know how effective the vaccine will be in people on Ocrevus or other B cell depleting therapies. Evidence in children with immunodeficiency suggest that the Memory B Cell subset, which is depleted by Ocrevus and other B cell therapies, is required for effective immunization against pneumococcus and it generally takes longer than 6 months for the memory B cell population (CD19+, CD27+ cells) to return after an Ocrevus infusion. In high risk populations (older patients and those with splenectomy) we would immunize before starting treatment. As a 23 year old you many have been immunized in childhood, since they started childhood immunizations in 2001. You may want to check your pediatric records.

As long as you are not significantly disabled or immunocompromised and as log as you still have a high functioning spleen, I would not consider you in the high risk group.

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.

Here is My Question: 
Have you ever heard of Autohemotherapy? I know it’s something not well known but can it be used to fight MS. 

Answer:
Autohemotherapy has been around for over 100 years, more commonly used in Europe. There is no good evidence (not even class III) of benefit in MS, but very few studies are reported. Mostly just anecdote at this time.

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: 
My glutamine level is low. I am vegetarian and wonder if that could be part of it or could it be something else? 

Answer:
Glutamine is considered a conditionally essential amino acid, which means that your body is able to synthesize it, but it becomes essential under periods of physical and emotional stress, systemic illness, high metabolic activity or severe deficiency in the diet. It is synthesized primarily in muscle and levels are related to muscle mass with lower levels occurring with lower muscle mass or muscle wasting disease. It is also the amino acid in the highest concentration in your blood stream. A low level could be due to measurement error (a common reason), metabolic stress, muscle wasting or diet deficiency. Supplementation and muscle strengthening is effective at improving this deficiency

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

This My Question:

Is this neurotrophic keratitis?

I was diagnosed with MS in 2013, symptoms in 2011. I have several areas of demyelination on brain MRI and c-spine at C1 and C5-6. I was seen by ophthalmology in 2016 for eye redness without discharge. I had keratitis and was given steroid drops. I was recently seen again and diagnosed with keratitis with corneal ulcer and treated with steroid eye drops.

I have had similar issues in the past two years but did not seek treatment because there was no drainage, it was not that uncomfortable and resolved in 3-5 days on its own. I asked my ophthalmologist if this was related to MS and was not given an answer. I do not wear contacts, have not injured my eyes. I did have lasik surgery about 10 or so years ago. My eyes may get a little dry but I have never been diagnosed with dry eye. I will see my neurologist in January, is there anything I should be asking him to evaluate or is not related to MS?

Answer:
This would only be considered neurotrophic keratitis if you have damage to your trigeminal nerve, leading to denervation of the cornea (lack of sensation in the cornea).

Typically in MS trigeminal nerve issues manifest not as neurotrophic keratitis but rather as trigeminal neuralgia, an extremely painful form of headache/facial pain.

Usually with neurotrophic keratitis, the trigeminal nerve dysfunction causes numbness/lack of sensation and this lack of sensation in the face and in particular the cornea leads to the keratitis.

You can see a cornea specialist or neuro-ophthalmologist to try to figure this out.

Benjamin Osborne, MD
Associate Professor of Neurology and Ophthalmology
Director, Neuromyelitis Optica (NMO) and Neuro-Ophthalmology Clinics
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital

Here is My Question: 
What would you recommend for a patient on Ocrevus and trying to conceive? I read that Rituxan is not associated with birth defects. I am on folic acid supplementation. Thanks! 

Answer:
While we have no data on this, the drug itself leaves a human after 6-8 weeks so some feel it is ok to get pregnant 8 weeks past last dose.

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

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 there any correlation between someone taking glatiramer acetate injections and having frequent (checked every three years) large colorectal polyps? I recently had a colonoscopy with the removal of a large polyp and was told that this could be a factor on size and frequency. I had never heard this before so I thought I would ask for some clarification. Thank you. 

Answer:
I can not conceivable think of how glatiramer acetate (i.e. either copaxone or glatopa) could contribute to GI polyp formation or polyp size. This also has never been reported in the literature

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

My question:
Does multiple sclerosis cause sleep issues?

Answer:
Your question is a very common one. Please use the search box in the upper right hand corner of this page to search for all that has been written on this site by our MS specialists about sleep issues.

Here is one blog to get you started on reading about sleep and MS. 

http://www.healthcarejourney.com/sleep-issues.html

Here is my question:
I recently had an MRI and it showed a lesion on my brain. The neurologist says it might be an early symptom of MS. Is this correct?

Answer:
The MRI scan alone can not diagnose MS. I'd be cautious about jumping to conclusions. 

Please see this prior blog about diagnosing MS and the common problem interpreting the significance of abnormal MRI results by a provider that does not have subspecialty training in MS:

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/the-diagnosis-of-ms

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

Here is My Question:
How can you control anger if the lesion is on that part of the brain.

Answer:
My brother in law used to say that anger is extremely useful but requires introspection, discipline and refocusing to apply to positive ends. The first thing you must do with anger is put is aside and contemplate it; not act on it immediately. We do this with kids when we give them a time out or send them to their rooms. This forces them to calm down their emotions and refocus their thoughts and energies.
​
For some people with MS, it can be difficult to refocus and inhibit their initial and subsequent emotional responses to whatever provoked their anger. They need the help and support of those around them, much like a parent provides similar support to a child.

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 secondary progressive MS and I'm doing well so I assume its non active...so my question is if there is a link between spirituality and progression? Could it be that MS being a neurological disorder creates hyper sensitivity in the physical body which forces one to listen to their body and manipulate external factors that stimulate that sensitivity and impact them in a negative way..for example I say I can not talk to so and so if I want to keep walking...so is it fair to say we can manage MS symptoms if we take an energy approach to healing? Or is it because I think my MS is non active actually since I've been diagnosed that I don't struggle with severe symptoms or ones I can't manage. 

Answer:
I’m not sure it is important to contemplate the mechanism of your stability. Meditation will allow you to remain mindful and focused on the positive. It will also make it easier to sustain an active and engaging lifestyle. This as well as a good support network will help you remain resilient against any effects of MS on your life.

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 there studies proving the Tysabri PML “Risk Factor” is reduced by extending dosing intervals to 8 weeks or more?

I selfishly ask: I was JC positive when starting Tysabri 8/2006. I had 132 TOTAL infusions 8/2006 to 5/2018 including 2 "Breaks" Break #1 was 7/2008 for 3 months, restarted 10/2008; #2 was 11/2011 for 8 months, restarted 7/2012. 

Break #2 was originally planned as permanent because 7/2012 LP found JCV antibodies in my CSF. I accepted risks compared to personal benefits from treatment and restarted Tysabri 7/2012. Last LP and CSF test 7/2013 was “normal.” Six month Tysabri protocol MRI’s show little change; symptoms stable and no flare ups. 

Began 5 week intervals in 2017 and 6 week intervals in 2018. JC titer range .5 to .8 through 1/2018. However “titer risk” increased 5/2018 to 1.25 and 10/2018 to 1.68. With more than 72 months of treatments and titers of 1.25 and 1.68 the “Risk Factor” table* shows PML risk of 1 in 333 and 1 in 100 respectively. SO…..

--Are the only tested and reliable risk tables based on frequency of treatments every 4weeks (13x annually) ?
--Has Biogen or any trustworthy entity created a “Risk Index” for PML with Tysabri on extended dosing of 6, 8 or greater week intervals? 

I know risk of PML greater w/Tysabri than Rituxan/Ocrelus.(Lemtrada ruled out).But I’m scared of changing from Tysabri, that’s worked to a new treatment with new risks. Any and all suggestions, comments, references and ideas welcome. 

Answer:
I will refer the author of this question to a research abstract from ACTRIMS meeting earlier this year which addresses risk for PML among JCV antibody POSITIVE patients among standard dosing (4 weeks) and extended dosing (more than 4 weeks but less than 12 weeks):

https://actrims.confex.com/actrims/2018/meetingapp.cgi/Paper/3102

The study analyzed Biogen’s TOUCH Program database.  Hazard risk for PML among extended dose patients was much lower and statistically significant compared to standard dosing.

I am not aware of a separate risk table for extended dosing patients.  While this study cannot evaluate the effectiveness of extended dosing on disease activity, this has been reported at numerous scientific conferences including this month at ECTRIMS:

https://www.neurologyadvisor.com/ectrims-2018/natalizumab-extended-dosing-schedule-multiple-sclerosis-treatment-efficacy/article/806221/

Even with this welcomed data and the observation that extend dose interval confers lower PML risk without sacrificing disease control, the decision to continue on therapy must be discussed with the treating physician.  

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