Here is My Question:
I have MS and I used to live in Florida and I lost everything now I live in Wisconsin and need my medications how can I get my meds from the doctor without my records and the office I was attending are closed permanently. 

Answer:
That’s a tough situation. I’m not in Wisconsin, but if you were seeing me, I would get your history and do a very detailed neuro exam to help confirm the diagnosis of MS. If unable to confirm with that alone, then we could try and obtain any outside imaging (i.e., calling the facility where you had an MRI done and ask if they can burn a CD of your images for review) or if a lumbar puncture was done then contacting the local hospital that likely ran the testing on the fluid may be able to print up the results. If all else fails, the doctor (assuming more is needed to confirm the diagnosis) can repeat images in Wisconsin and/or obtain necessary lab testing to rule out mimicking diagnoses of MS.  

Any prescribing physician needs to have evaluated you prior to prescribing medications. I’d suggest you get in to see a specialist ASAP.

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

Here is My Question:
My sister is 37 and has had problems of frequency, dysuria and stress incontinence for the last 3-4 years, but these symptoms have been bothering her a lot for the last 2 years. Last year she had an ovarian benign cyst removed and the doctor also did a TVT procedure but both did not improve her present complaints. She now urinates every 10 - 20 minutes.

She has been recently diagnosed with MS but her MS specialist is reluctant to start the treatment since MS can be seen only in brain and not in spine even though she has MS symptoms,  for example severe pain in hands and legs which comes and goes, tingling and numbness, migraine, dizziness and severe weakness.

According to him MS has nothing to do with bladder since it doesn't show up in spine MRI. Her urologist though disagrees with her MS doctor and insisting that it is due to MS. I wonder if there is anyway you can help us out. She is in lot of pain and there is no treatment that can give her some relief.

Thanks a lot.

Answer:
The fact is that MS can affect the brain, optic nerves, and spinal cord.  Spinal cord involvement typically manifests with (among other things) bladder dysfunction.  I would suggest you get another opinion from an MS specialist.  If you provide your location and the distance you are willing to travel for the second opinion, we can help identify a fellowship trained MS specialist to assist you.  The MS specialist can also make sure that the patient does indeed have MS and not a mimicked of the disease that can also cause bladder problems.

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

Here is My Question:
I've been diagnosed with RRMS for 9 yrs. I go to a MS Center at a major hospital. My "Neuro exams" at first were thorough. Now I am checked for sensation, reflexes, eye tracking, & finger/nose touch only. They know I have balance problems so they don't ask anymore to see me try the balance tests. I'd like to know what other clinics/MDs do. I know exams vary for each patient, but I feel like my MD isn't quite the "MS Center" he thinks he is.

Answer:
It depends.  Once MS has been diagnosed, the neurological exam primarily serves as a way to confirm a new relapse or inflammatory event, but more commonly to monitor for progressive changes consistent with a primary progressive or secondary progressive course.  Clinical metrics that are more common to follow are based on the standard clinical scoring scale called the EDSS (expanded disability status scale) which requires a thorough neurological exam including the items you mentioned.  Also, the MSFC (multiple sclerosis functional composite) introduces other measurements such as the 25’ timed walk, 9-hole peg test time, and a cognitive test such as the PASAT (paced auditory serial addition test) or SDMT (symbol digit modalities test).  In general, I like to follow (over time) best corrected vision, a leg test (25’ walk test), arm test (9-hole peg test), and cognitive test (symbol digit modalities test).  However, I’ve found that these measures are best obtained annually since progression in MS is typically seen over longer time periods rather than over the short term.

If you have concerns over the monitoring of your MS, I’d suggest asking your physician about how he follows this and set up a plan to measure relevant testing over time.  You can request the measurements for yourself so you can keep track of this also.

Hope this helps.
A. Scott Niesen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I need to strengthen a weak leg and my doctor told me that I have stiffness. I am wondering when I am not at the gym, which stretches or strengthening exercises can I do at home?!

Answer:
The best advice for this question is to pursue an evaluation by a physical therapist for instruction on the appropriate stretching and strengthening exercises. The PT can provide a comprehensive home exercise program that can be followed in conjunction with any gym activity. There are multiple muscle groups in the lower extremities; the PT evaluation will determine which areas require strengthening and stretching.

Matthew Farr, M.S., P.T.,
Mandell Center for Multiple Sclerosis
Mount Sinai Rehabilitation Hospital, Hartford CT

Here is My Question:
I have been diagnosed with MS for about 7 months now and have been taking the medication. In the past few weeks, I have been experiencing burning in my head. Is that normal?

Answer:
“Burning" sensations in the scalp can be caused by many things including MS. You should contact your local doctor to have this evaluated, if the sensation is causing discomfort or annoyance in any way. These sensations do not usually indicate anything to be concerned about with regards to your MS.

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:
Hello,
I have been having many symptoms of MS. Numbness, gait/balance disturbance, blurred vision, tremor, etc. I recently had an MRI of the Brain and Spine. It was done in the evening and the report reads 12:53 a.m. My issue is, the report is very generic. Only noting the very obvious. 

I'm no MD, however I am an RN and attending college for my APN. I have software that allows me to adjust the volume elements (grayscale) as on my MRI. In doing so, and before, I'm able to see hyperintensities. I see them as "isointense" on the original image(T2 axial). Once I saw them I was able to find the on other images as well and without any adjustments. I'd like to know why lesions are missed and what can be done about it?

In my case, I'm willing to seek 2nd/ 3rd opinions. I'm suffering, and for what, laziness? I had to study my MRI for many hours, and it seems like he only glanced at them. This is my life, and and tired of suffering. Please help.Thank you.


Answer:
An MRI provides a structural rendering of body tissues based primarily on water content and environment in tissues (including the presence of paramagnetic substances like iron or contrast agents) portrayed on a gray scale (a continuum from bright white to black). We often adjust the window settings in the images as you’ve described to more clearly see differences in tissue characteristics or identify artifacts from the imaging technique.

The interpretation of an MRI depends on an individuals’ age, symptoms and associated medical problems (e.g. headaches, hypertension, hyperlipidemia, diabetes, psychiatric illnesses etc) . These white spots on Brain MRIs are very common and Multiple Sclerosis is one of the LEAST common causes of these white spots.  It is precisely because these white spots on an MRI are so infrequently caused by MS, that they require careful deliberation based on your age, co-morbid medical conditions, symptoms, and findings on examination. This obviously requires expertise and often second or third opinions.

I hope this helps.

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:
What do we know about Ocrevus rebound? Is it like Tysabri? 

Answer:
The short answer is ‘no’.  While the experience of Ocrevus is still limited, the similar biological Rituximab, which is given off label for MS suggests no significant rebound coming off these b-cell targeting therapies.  

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

Question:
Is it safe to have a regional nerve block in addition to general anesthesia for shoulder surgery? My MS causes neuropathy, I have raynauds, and concerned if this will be safe or make recovery worse. Thanks.

Answer:
I would ask the anesthesiologist; I see no neurological contraindication to a regional nerve block for this type of surgery.

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

Question:
What is the connection between ms and persistent charley-horse leg cramps?

Answer:
MS, like many conditions, can cause irritability of motor neurons or motor nerve roots leading to cramps and charley horses

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

Question:
Within 48 hours of receiving Rituximab infusion, I caught a viral illness. My throat is sore, stuffy nose, body aches and is exhausted, and I have slight chills. My children both developed high fevers (102+) from this illness. What should I do?

Answer:
Call you doctor and follow the usual remedies for a viral upper respiratory tract illness, particularly using tylenol or ibuprofen to keep down your temperature. You should get better soon.

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

Question:
I am a 60 year old woman who was diagnosed with MS about 5 years ago, but my MS doctor said that I probably had MS for 10 years prior to that after he reviewed my prior MRIs....My question..My sense of taste and smell has been affected since about May 2017.... Food tastes bad and smells weird, like burned coffee or rotting grass..... Nothing tastes like it should...I'm starting to lose a little weight since I don't eat as much...will I ever get my senses back to normal or is this as good as it gets? How can my doctor determine if this is MS related or something else? Thanks.

Answer:
Altered or unpleasant tastes and smells are uncommon on MS. It is far more common to experience loss of smell and taste to some extent. It is far more common for altered or unpleasant tastes and smells to a result of viral infections, toxins or vitamin Deficiencies. Have you doctor do an evaluation first and then provide you with some vitamin supplement recommendations, particularly for zinc and vitamin B12.

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 has suggested antibody infusion as one of the options for me when I asked about being pregnant. Could you please explain about antibody infusion?

Answer:
"Antibody infusions" refer to one of the many monoclonal antibody therapies that we use to treat MS; These antibody therapies include
1. Tysabri
2. Rituximab
3. Ocrelizumab (Ocrevus)
4. ALemtuzumab (Lemtrada)
5. Daclizumab (Zynbryta)

Another “antibody” therapy would be pooled immunoglobulin, a blood product often referred to as IV Ig.

Antibody therapies do not tend to cross the Placenta during the first trimester of pregnancy, minimizing risk to the developing fetus. At the same time it is important to know how long the antibody therapy stays in your system, which differs between the drugs.

Hope this helps.

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

Question:
Is there any diagnostic relevance to new T2 hyperintensities on a brain mri? if previous scans have shown nonspecific lesions and there are new, but still nonspecific lesions, is this helpful info for a diagnosis?

Answer:
I guess the answer depends on who thinks the T2 lesions are non specific. If I felt they were non specific, they would still be non specific on a repeat MRI.

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

You should have a spinal cord MRI for foot drop if:
1.  This is not caused by a root or nerve injury or other disorder (usually determined by exam)
2. There is no obvious cause of the foot drop particularly if other muscle groups are involved in that leg or both legs

 For instance, if your doctors already know the foot drop is caused by MS involving your spinal cord there is no reason to get another MRI.

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:
When you say 150 minutes of exercise per week, do you mean cardio or does the 150 minutes include weights and resistance exercises?

Answer:
​150 minutes of moderate vigorous exercise per week. This refers to the aerobic component. Moderate vigorous exercise is defined as a level of activity at which you have difficulty maintaining a conversation because of breathing heavily.

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:
I was diagnosed in December 2014 and have had a rough road. In April or May 2015 it took a turn for the the worse. I became disabled in a wheelchair. They put me on Tysabri in June 2015 and I am up walking again but walking like a drunk. I have the JC virus and my levels have been under one but now it is at 1.6. What levels of the JC virus should I stop and consider another drug? I am so nervous if I have to change because I don't want to go back down the same road as before. I go back to the doctor next week. Just wanted some opinions.

Answer:
You are in a relatively high risk group for the development of PML (1 in 100 or 1 percent)  if you remain on Tysabri infused every 28 days. Your best options are as follows:

1. Switch to every 56 day tysabri infusions (every 2 months and no sooner no matter what) with non contrast MRI monitoring every 4 months that includes FLAIR and DWI trace images to detect presymptomatic PML.  There is evidence that this protocol  significantly decreases the risk of developing PML and maintains control of your MS.

2. Switch to Rituximab or Ocrelizumab. Both are highly effective and capable of preventing a rebound, severe relapse after stopping Tysabri.

3. Switch to Lemtrada, another highly active therapy if you do not have risk factors for this treatment.

Good luck to you. Pass along these ideas to your MD for his or her thoughts.

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

Question:
I am starting Ocrevus next month and my doc wants me off Tecfidera for one month prior. Why do I need to be off for so long prior since Tecfidera has such a short half life?

Answer:
One reason to stop Tecfidera for a month or longer before starting Ocrevus is to make sure your blood lymphocyte count returns to the normal range. This helps minimize the risk of further immunosuppression.

If your blood counts and lab work is normal, there I see little reason to wait a month. 

Many doctors have different levels of comfort when switching from one DMT to another and prefer to play things safe. It’s important for both the patient and the doctor to feel comfortable with the treatment decision; waiting one month will probably not adversely affect your 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 told my neurologist that I suspect I have transitioned from RRMS to SPMS several years ago. After more decline in cognition in 2017 and MRIs showing brain atrophy and atrophy of the spinal cord, my general neurologist told me to go get an opinion from an MS Specialist. I got a remote second opinion through an employer sponsored program. I uploaded my MRIs, Reports and medical records. The neurologist who reviewed my case stated:

-You have Multiple Sclerosis
-Your cognitive difficulties are due to progressive brain injury from the MS
-Your leg difficulties are likely due to progressive injury in the thoracic spinal cord

He commented that substantial brain atrophy had occurred between 2007 and 2016 and that difficulty feeling my legs is due to lesions in the posterior portion of the Thoracic Spine.

He wrapped up by stating he felt that I may have a component of progressive disease as well as inflammatory disease with new lesion formation.

I do not understand the statement above, can anyone explain?

Answer:
The concepts of progression and inflammation are somewhat independent of one another.

When considering inflammation in MS, we are referring to confirmed new relapses of neurological disability that is due to a new discrete inflammatory event in the central nervous system.  Another sign of inflammation is new or enlarging, or contrast enhancing lesions on MRI.  Evidence of inflammation such as these examples suggest that the disease course would be benefitted by a disease modifying therapy.

It is possible to show signs of inflammation but also to show signs of disability progression.  This is typically defined as the accumulation of permanent disability that can be detected on your neurological examination.  This can be reflected in many ways.  More typically, ambulatory dysfunction is readily seen as a sign of progression.  However, progression can also occur in coordination problems, bladder or bowel changes, cognitive dysfunction, visual disturbance, etc.  The point is that the worsening in the exam doesn’t get better but remains 3 or even 6 months later on the exam (when we see this we call it “confirmed” progression).

The progressive phase of MS, which is experienced by the majority of MS patients later on in the disease course, is felt to be a different phase of the disease and not entirely explained by inflammation (indeed, the progressive phase often occurs while there is no signs of ongoing inflammation).

In other cases, you can see both in the same patient.  When this happens, some of our MS disease modifying therapies may be able to slow down the disease course.  The b-cell depleting therapies (such as Ocrevus or off-label dosing of Rituxan) have data showing they can slow down the progressive phase in these types of patients.  

The important take away from this is that we are less interested in using those old names for MS (ie, relapsing-remitting, secondary progressive, primary progressive, etc), but we are more interested in knowing if there is ongoing signs of inflammation which would argue for use of an appropriate Disease Modifying Therapy that may help slow down the disease course which should translate into more time with a better quality of life (compared to doing nothing to treat the disease).

Hope this explanation helps.

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

Here is My Question:
I have MS and I'm tired of getting my eyes examined every year because my eye sight changes every time they change my MS medicine. Can I qualify for lasik surgery for my eyes?

Answer:
You would need to see an ophthalmologist who specializes in performing LASIK surgery to see if you would qualify.  Having multiple sclerosis would not exclude you from having LASIK surgery.

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