Question:
I have been prescribed Symmetrel 100mg for fatigue. Can I take this only if I am feeling fatigue, or do I need to take it everyday to give me the best results? I have not taken it yet. My other medication I take is Laroxyl 100 mg a day. Thank you in advance.

Answer:
Amantadine (brand name Symmetrel although everyone uses generic) works best if taken regularly for fatigue. However, some people feel that the benefits diminish with daily use and only take it Monday through Friday when working or going to school

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

There is no relationship between brain aneurysms and the development of MS.

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

Question:
​My question is if there is a connection between MS and running low grade fever (~99.5+)? I am about 4.5 months off Tysabri, and scheduled to start Ocrevus at the end of December. For the last two weeks I have been running a low grade fever, on and off, though more on. At the same time, I have been more fatigued. After a few days, I was checked for flu, along with a few negative blood tests. No indication of infection, but if it persists, I'll get further checked out. While the greater fatigue is likely due to the rise in body temperature, I wonder if the fever itself could be associated with the MS, perhaps indicating disease activity and inflammation? A bit of internet research showed this question on MS boards, along with stabs at an answer by fellow board mates, however, I could not find the question addressed by any experts or health professionals.

Answer:
Low grade or any grade fever would not be a manifestation of MS. If anything patients with longstanding MS tend to run lower temperatures.

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

Question:
My daughter is 16 and was diagnosed just over 2 years ago. She is currently on Tysabri infusions because all the other drugs have not worked for her. New MRI's every 6 months reveal increase in size and number a lesions. Right now they figure she has about 30, all in the brain. She is JC positive and that freaks us out. She was just told to pick between Ocrevus & Lemtrada because she is experiencing a lot of fatigue and flushing after the infusion. It drains her and we know that is not typical. We've been told to choose and if you can help it would be very much appreciated. Thank you.

It is very hard to answer your question without knowing all the details of your daughter’s situation. I certainly can help you think through the process.

First, you are correct about her JC + status being a concern, but this is mostly a concern in those people with antibody index values over 1.0 who have been on Tysabri over 2 years so do not fret.

Second, Ocrevus and Lemtrada are both great treatments for MS but have not been compared to each other so we can not determine the relative advantages or disadvantages of each. It is true that Lemtrada requires more monitoring and there is a risk of her developing autoimmune conditions (usually autoimmune thyroid disease), but she is young and if she is as healthy as most 16 year olds will do well with this treatment.  

​If she is TPO positive (Thyroid peroxidase antibodies), you may be inclined to favor Ocrevus since she would be at increased risk for autoimmune thyroid disease after treatment with Lemtrada. These are all issues to discuss with 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:
My doctor took me off Gilenya because of low WBC and below even the normal low lymphocytes. I have been off about 3 weeks I have noticed some of the symptoms I had before I started Gilenya have come back like the chest hug and trigeminal neuralgia stabbing facial pains. We did have a cooling off here in the weather I could relate it to that but thought I would ask. Is the Gilenya still in my system? How long does Gilenya stay in your system? I have follow up lab work to do in a few weeks.

Answer:
Gilenya is generally out of your system completely within a month; in fact you need to go through another first dose, 6 hour observation if you are off Gilenya for more than 2 weeks. So your report of a return of symptoms within 3 weeks of stopping Gilenya is very possible.

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

Question:
Where will the white matter lesion be positioned if you have urinary retention? 

Answer:
Urinary retention can be caused by demyelination anywhere between the upper brainstem and the lower spinal cord. However, urinary retention in isolation (without a lot of demyelination elsewhere) is usually caused by demyelination in the lower part of the spinal cord near the conus medullaris.​

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

Question:
​My wife is taking Tecfidera. She has a mild case of Type 2 Diabetes (15units of insulin/day), and has psoriasis that the Tecfidera has completely removed. She is going in for a 12 hr abdominal surgery. Her absolute lymphocite count is at a steady 500. There is a question of how that may affect the fighting of infection after surgery. Also if a person stops taking Tecfidera: how long does it take to bring the lymphocite levels up and at what rate? Also how soon will the MS symptoms begin to return? And how soon will the psoriasis begin to return? Averages for most people?

Answer:
These are all excellent questions; let’s take them one at a time:

1. A slightly low lymphocyte count should have little effect on her recovery from surgery. Most post operative infections are from bacteria and require adequate, functioning neutrophils, another type of white blood cell not affected by Tecfidera, to prevent.
2. Lymphocyte counts can take weeks or months to return to a normal level after stopping tecfidera; sometimes, lymphocyte counts remain low indefinitely. Generally speaking the longer a person remains on Tecfidera after their lymphocyte counts become low, the longer it takes for the lymphocyte count to return to normal.
3. No one knows how long it takes for MS disease activity to return after stopping Tecfidera, but there are no reports yet of a rebound of MS activity. The only way we would know the answer to this question is if we purposefully stopped Tecfidera in a large group of patients and monitored them with frequent imaging and visits for a return of disease activity; as you can imagine no one is willing to do this at this time. There is little reason to believe based on anecdotal experience that there is a rapid return of disease activity 

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:
Can Optic Neuritis Be Diagnosed After the Acute Stage?

About a year ago, before MS was even on my radar, I experienced blurry vision in my left eye that I noticed one night out of the blue. Over a few days, the blurriness got worse until I could only see detail about 3-5 feet in front of me out of that eye. Before this, my vision in both eyes was 20/10 so a decrease in vision was really, really noticeable! Due to insurance reasons, I never went to a doctor or an ophthalmologist. It eventually got better about 10 weeks later and I no longer worried about it.
 
I had another episode in the same eye 2 1/2 months later but it wasn’t as bad as the first time and it followed an almost identical course as the time before. I did go to the doctor and ophthalmologist the last time and my vision in that eye was 20/30 and 6 months later 20/20. No bleeding, tumors, increased pressure, etc. The exam was fine. 

I had an OCT Scan done a year after the initial event and I have optic nerve thinning in both eyes: RNFL is 92 OD and 82 OS with my superior quadrant being in the 0% OU, the inferior quadrant being in the 5% and a 30 point difference in the nasal quadrant OS. My ophthalmologist did not know what to make of the findings so he just said we’ll check again in a year. He also didn’t seem to know that retrobulbar neuritis existed so I’m not putting much stock in his opinion anyway. 

My vision is much better but at the end of a long day, or if I get overheated, the vision in my left eye blurs a bit and everything looks much darker as if I’m looking through two different lenses. 
Based on this information, could a more experienced neuro ophthalmologist tell if it was ON a year ago? 

Also, does ON always cause pallor of the optic nerve? I was told my nerve had no pallor but once again, I’m not so sure I trust my ophthalmologist. 

Answer:
Yes you can have optic neuritis diagnosed by an experienced neuro ophthalmologist.
​
It is always easier to diagnosis it when the acute vision loss occurs but if the neuro ophthalmologist is able to obtain a complete history and exam and review your OCT findings (and perhaps an MRI of the brain), he/she should be able to make the diagnosis if you have had optic neuritis.

Benjamin Osborne, MD
Associate Professor of Neurology and Ophthalmology
Director, Neuromyelitis Optica (NMO) Clinic
Director, Neuro-Ophthalmology Clinic
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital
3800 Reservoir Road, NW 7PHC
Washington, DC 20007

Here is My Question:
I've been reading about the connection between immunotherapy and cancer. Does this mean that if I use an immunotherapy drug for MS that it might lead to cancer, or would it help deter cancer? 

Answer:
Most of the therapies used in RRMS have not had any association with cancer, there are some exceptions. The most notable, is the recently approved ocrelizumab which has a listed concern for breast cancer based on the trials. This link was weak, but the FDA noted it on the drug’s label. There are no known benefits from MS therapies relative to cancer risk.
 
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:
Is it true that the medication Tavist (clemastine) can help repair the myelin sheath?

Answer:
It is currently under study for just that. The first trial suggested it might work, but did not document clinical improvements in patients.

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 have to have surgery for a uterine polyp that is causing inflammation in the uterine lining. I was going to have it last week but then had to do a round of solumedrol. I am going back on DMT soon - waiting for Betaseron to arrive. The surgery uses monitored anesthesia - between twilight and general.
​

1. Do I need to wait a certain amount of time after solumedrol and prednisone to have surgery?
   
2. Is it safe to have surgery while taking the Betaseron? 

We usually wait at least a month after stopping steroids before processing with elective surgery.

Betaseron will not interfere with surgery or recovery.

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:
Are there treatments for primary progressive MS?

Answer:
There are many treatments for primary progressive MS depending on your needs: These include:

1. Treatments to alleviate unpleasant or troublesome symptoms such as spasms, urinary urgency and abnormal sensations (e.g. burning, tingling, pins and needles)
2. Rehabilitation treatments to improve function 
3. Disease modifying therapy in appropriate cases to slow the rate of worsening. At present the only FDA approved therapy for this purpose is called Ocrelizumab (brand name Ocrevus)

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 would like a more updated answer to the question can a person with MS get lasik.

Answer:
I am aware of any information regarding MS and Lasik Surgery than what is published on this site. READ MORE

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

​Answer:
Loss of bladder control is very common and very treatable. It is important to determine how much of the problem is caused by the MS. You need to see a urologist who specializes in bladder control problems.

In the search box on the upper right side of this page, type in 'bladder' to read more about bladder issues and MS.  Also, here is a blog that helps explain bladder issues for people with MS. CLICK HERE TO READ MORE

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 read some medical journals that describe the ependymal for dash sign as an early marker for MS. It seems that most of these papers were written over a decade ago it makes me wonder if they are still considered as a relevant finding. My MRI images show them but they were not reported on. Granted, my MRI was interpreted by a general radiologist and not a neuroradiologist so I wouldn't expect it to be picked up on easily. Do you find that the dot dash sign has clinical relevance when reviewing MRI's in the early stages of MS?

Answer:
I view the “dot dash sign” as a potential indicator of early MS. The involvement of the corpus callosum is not specific for MS but can be seen in other injuries to the nervous system as well (i.e., Susac’s Disease, Marchiafava-Bignami, leukodystrophies, neoplasm and lymphoma, vascular injuries such as stroke, etc). Articles commenting on the dot-dash sign and development of MS tend to show evolution of these initial lesions into the classic “dawson’s finger” that is characteristic of periventricular lesions of MS. The presence of the dot-dash sign in the absence of the cardinal lesion morphology of MS (i.e., periventricular/juxtacortical/infratentorial lesions) should be monitored but not regarded as part of the rationale or proof for treatment of supposed MS. 

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

Question:
I was diagnosed with MS two years ago and started on Tecfidera. About three months later, I began to experience moderate hair loss. I saw 2 dermatologists and am using minoxidil 5% without success. My blood tests all came back normal. Tecfidera has controlled my disease quite well but I have now lost almost 2/3 of my hair and have bald spots on the top and sides of my head.

As a woman, I find the hair loss very disturbing and cannot take any further hair thinning. So now I am looking at other MS medications. Injectables are not an option because I travel overseas frequently and cannot keep medications refrigerated during trips. My travel schedule also rules out Tysabri. The MS nurse suggests I try Gilenya. My understanding is that a higher percentage of patients on Gilenya report hair loss relative to patients on Tecfidera, so why would I switch? In addition, I have a family history of fatal heart attacks. Though Ocrevus is now FDA approved, the risk of cancer concerns me. Would Rituxan be a good option for me? If Rituxan is not approved by my insurance since it is off-label, what other options do I have? 

Answer:
You’ve done a nice job trying to use available information to make an objective decision, but let me point out some areas where you’ve gone astray. However, I need to  make a number of assumptions before I begin: first, I know nothing about your MS type, disease severity  or your treatment history prior to starting Tecfidera, so I can not make recommendations based on these characteristics; these features are extremely important to understand the best choice of treatment. Second, I know nothing about any other medications you take or other physical or mental health conditions that may be contributing to your hair loss, so I will assume the hair loss is caused by the Tecfidera. So given these assumptions, here is what you should know:

1. The medications you are considering have different mechanisms of action and side effect profiles. Therefore, you need to think of each medication as independent decisions. For instance, if you flip a coin 8 times and it comes up heads each time, your chance of heads or tails on the next flip is still 50 %, unless someone is using a 2 headed coin. What this means is that each action is independent of the prior action. Therefore, just because Tecfidera caused hair loss does does not mean that any other medication that lists hair loss as a possibility will, in fact cause you to lose hair. This would only be true if the two medications were related in some way or you restarted the new medication before your hair started to grow back.

2. We have little reason to believe that the risk of breast cancer differs between Rituximab and Ocrevus based on mechanism of action. Therefore, it is possible that people have not noticed a real increased risk of breast cancer previously with rituximab or that the increased risk noticed with Ocrevus was based on the sample selected for the study or there is something we do not know about Ocrevus that uniquely increases the risk of breast cancer. For all these scenarios, it is important to note this possible risk and get regular cancer screening (usually mammogram and pap smear as well as colonoscopy if you are due for it)  before and after starting Ocrevus or Rituximab if this is the most appropriate choice of DMT for you at this time. Again, as I know nothing about you or your MS, I am not able to tell you if this is a good choice for you.

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:
How does a radiologist distinguish between long spinal lesions and MRI artifacts? 

Answer:
Part of the interpretation of the MRI by radiology typically comments on the likelihood of artifact. Common among artifacts is patient motion which can obscure the cord (among other things).

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

​I assume you are asking if the medications we use to treat a painful neuropathy, which usually causes burning and tingling, are the same as the medications we use to lessen the unpleasant sensations that people with MS often experience. If this is your question then the answer is generally yes

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