Here is My Question:
I am experiencing what seems to be SPMS, and having a huge hard time starting on Ocrevus since it was NOT approved for secondary progressive but rather for pimary!

Any advice from you would be greatly appreciated. I have had MS for about 25 years and have as of 4 or 5 years ago been experiencing a lot of fatigue and increased balance issues. 

Answer:
Let me try to help you frame your question in a way that will help you and your doctors. The information provided in your question suggests that you are at least 45 years old, and possibly over 60, with symptoms related to MS for at least 25 years. Whether you have secondary progressive MS is really in the eye of the beholder. As neurologists we define progressive MS as a measurable and consistent decline in your performance  for a period in excess of 6 months not caused by relapses, although having SPMS does not mean you can not also experience relapses. An example would be a patient with mild right leg weakness and a limp on visit 1 followed by gradual onset of more severe weakness in the right leg and mild weakness in the right arm  observed 12 months later associated with the need for a cane to walk followed by worsening weakness on the right side and greater difficulty walking 24 months after the first visit.  This is not to say that people with SPMS experience a continuous decline in function; Don Goodkin published a study in the 1980s showing that many people with SPMS remain stable over intervals as long as 2 years suggesting that the apparent or perceived progression of the illness is discontinuous in nature. 

There are other people with longstanding MS who initially experience a relapsing remitting course but eventually stop having verifiable relapses (or they become very rare) and also do not experience measurable worsening of function over intervals in excess of 2-3 years. Yet these same people accumulate a number of problems over time as a result of prior disease activity. These problems tend to involve symptoms such as  pain, mood disturbances, sleep disruption, fatigue, dizziness and impaired balance. These problems, in turn are often worsened by unnecessary medications, co-existent medical problems (e.g. diabetes), decreased activity levels and social isolation. To make matters worse your body and your nervous system continues to age but you have less resilience to the effects of age because of prior damage from the effects of multiple sclerosis. 

Regardless of whether you have SPMS as defined in the first paragraph or your condition is more appropriately characterized by my description in the second paragraph, the first step in management is to define your current problems and all contributing factors and work to address these issues, specifically. Disease modifying therapies will not be the solution; while some, such as the recently approved siponimod (Mayzent), may help prevent further progression in the correct circumstances, none of them will help with your fatigue and balance issues. So what do you do?

First, you identify all the potential causes of your fatigue including underlying medical problems (e.g. hypothyroidism), mood disturbances (anxiety and depression), sleep disruption and  especially medications. It is particularly common for people with longstanding MS to find themselves on a long list of medications that will worsen fatigue; in these cases we often find that gradually stopping all these medications under a doctors supervision is remarkably beneficial.

Balance issues are also commonly worsened by medicationsm, but usually require intensive neurorehabilitation to resolve (e.g. physical and occupational therapy) .

Start with this approach and avoid the trap of looking for a solution with a new disease modifying therapy. Once you’ve had some success managing the fatigue and balance problems, then you can begin discussing whether it is even appropriate to consider disease modifying therapy at your stage of the disease

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:
I had an attack 4 years ago where my legs went completely numb and I had a tremor, but all resolved in a month. My MRI was all clear and my exams were normal. I have had right side weakness and my arms have become weak over the years. I have seen many neurologists over 4 years who say all my MRIs and exams are clean. Now over the past year I haven’t seen anyone and now I can’t lift my left foot up. It is like a 5 pound weight. My arms (mostly my shoulders) are very weak as I can only wash my hair once a week. Just the idea of moving my arms above my head is too hard or putting my bra on too difficult. My hands are strong. My right side is still a little weak and I do limp if I walk to much with right side.

​I just saw an Internist to figure this all out and he said my exam is positive with weakness but my spine was clear. Brain hasn’t been done in 2 years. They just ordered that and he wants me back to a neurologist!! So this has to be MS? Help! I am a 51 year old female. Is this PPMS? They all laughed and reassured me for years I was fine. The only other thing I remember is pain behind my right eye a few years ago and I felt some burning sensation on thoracic area a few years ago ? What advise can you give me?

Answer:
I’m very sorry to hear of your physical struggles which is worsened by the fact that prior evaluation couldn’t pin point a cause. MS shouldn’t be the only consideration. A skilled, inquisitive, and detailed neurologist can assist with careful exam to try and localize where the problem is focusing on (ie, muscle, peripheral nerve, central nervous system, etc). Based on that, a focused or expanded evaluation may be indicated. Unfortunately some neurological issues require longer periods of time to manifest what they are. For lengthy periods of time, they can even stay beneath the detection of an MRI.

In order to answer your ultimate question of what can be done, the neurologist can assist at this point in time to hopefully narrow down possibilities.

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

Here is My Question:
Can Prolia be used with Tecfidera?

Answer:
Prolia is a biological (protein) that should not interfere with a small molecule like Tecfidera.

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

Here is My Question:
Hi, I'm a 23 year old male and have left side optic neuritis, a lot of plaques at periventicular and central semioval and juxta cortical areas on MRI, 3 enhanced lesions. This is my first attack, please tell me the next step after corticosteroid pulse therapy.

Answer:
You should see a neurologist who specializes in treating multiple sclerosis. Optic neuritis is frequently due to MS and the MRI findings you describe sound suggestive of MS but you need an neurologist with expertise in MS to confirm that diagnosis. If that diagnosis is confirmed, the neurologist will most likely recommend starting treatment for MS (there many different medications now approved by the FDA for treatment of MS).

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:
Can Spasticity Be Caused By Brain Lesions in MS?

I’ve am diagnosed with MS and although I do not have any visible lesions on the spine with MRI, I experience generalized stiffness and tightness throughout my body. It is extremely apparent in both legs. I am unable to stretch my legs well when they are out straight and I have to bend my knee to do any type of stretching. This has gotten progressively worse over the past few years. 

Is it possible to have spasticity without spinal cord lesions? Are there certain areas of the brain that would be responsible for this? 

Answer:
It is certainly possible for people with MS to have spasticity in the extremities without any discrete lesions visible in the spinal cord. Spasticity can occur as a result of injury anywhere between the cortex of the brain up to but not including the anterior horn cells of the involved region in the spinal cord

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