Question:
My sister was born blind in 1 eye and has had Optic Neuritis 3 times which unfortunately hit her good eye. She now has pinhole vision and I stumbled upon Anti LINGO 1. We live in MA and would be interested in finding out about any clinical trials of this new medication if possible. Any guidance would be greatly appreciated.

Answer:
I am so sorry to hear about your sister. I believe that Biogen is still recruiting patients for  an Anti-LINGO (opicinumab) clinical trial in relapsing MS patients. Please use the following contact information to learn more.

Good luck

Contact: US Biogen Medical Information 866-633-4636 [email protected]

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 significant volume loss, am 57 and just diagnosed, with several brain lesions, 2-3 black holes and 2 spinal cord lesions. The only clinical episode I can recall was my CIS in 2012 in which one side of my mouth wouldn't smile and I had 24 hours of double vision in one eye. My Primary Care doctor diagnosed atypical Bell's Palsy after my Brain MRI showed significant volume loss and white matter ischemia as well as a small old stroke which I had been unaware of.

My "Bells Palsy was treated with steroids and antivirals and resolved in 4-5 days. My MS was only diagnosed this year when lesions were found in my cervical spine when an MRI was done prior to epidural steroid injection for degenerative disc disease and scoliosis pain. The spinal lesions were followed up with a Brain MRI and I was appalled at all the damage there.

I have had no relapses but my Neurologist diagnosed me with Relapsing/Remitting MS and I don't understand as I have had no relapses that I know of.  Can you help me make sense of this?

Answer:
People very similar to you are being seen more and more frequently in large MS Centers.  As you know, most people are diagnosed with MS at a much younger age, but late onset MS is on the rise. There are several reasons:

1. The early symptoms of MS are often missed or attributed to something else. You received a diagnosis of “Bells Palsy” that was incorrect. Bells palsy only involves facial movements, so the addition of double vision excludes this diagnosis. Using the rule of parsimony, it is most likely that your symptoms in 2012 were related to MS.

2. MRI scans are often misinterpreted. For instance, if you are over 50 years old the radiologist is more likely to call any abnormalities, “strokes” and sometimes this diagnosis is never revisited when new things happen (i.e. they are just called another stroke); but if you are younger the abnormalities on MRI are more likely to be attributed to MS. If you do not have stroke risk factors (e.g. hypertension, hypercholesterolemia, smoking, diabetes or heart disease) then it is even LESS likely that you’ve experienced a stroke. Strokes and MS are both clinical diagnoses supported by MRI, not vice versa.

3. The volume loss can be associated with a corresponding large number of T2 lesions (i.e. the white spots or “lesions” on the MRI) or a relatively small number of T2 lesions. In the former situation (i.e. volume loss with few lesions) the most common scenario in your age group is slowly progressive MS. In the later situation (i.e. volume loss with lots of lesions) the most common scenario in your age group is long standing relatively asymptomatic MS simply expressing itself later in life.

No matter the situation, it is probably important to get CSF confirmation of your MS diagnosis because of your age.

Good luck and I hope you find a good MS specialist to help you out.

Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director

Is it possible to restore walking if I haven't lost my strength. I can walk with a walker but still not showing signs of MS all of my MRIs are clean and all my neurologists tell me I'm stable so I went off all the opiates he was giving me and feel no more fog my question is can I restore the walking I'm 36 and this diagnosis and decline came suddenly with no response from my doctor.

The ability to restore function, such as walking, depends almost entirely on what is causing your problems. If your MRI scans are, “Clean” without evidence of MS then you need to find out the cause of your problems. I am glad to hear you’ve been able to stop the opiate medications. That is important progress. If your current neurologist will not tell you his or her thoughts, then it is probably time for a second opinion with another neurologist, preferably someone experienced. 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 am scheduled for bariatric surgery on July 2, 2018. My surgeon is concerned that Copaxone will inhibit wound healing, and is now going to discuss it with my neurologist. Surgeon wants neurologist to assure her that the medication won’t effect my recovery. I’m afraid she is going to cancel my surgery! I’ve only had two doses of Copaxone (just started it). Does Copaxone inhibit healing after surgery? Do you think this would be a valid reason to cancel my surgery?
Thanks for your help.

Answer:
I have no concerns about copaxone affecting healing post-operatively. I have had patients over the years take the injectable therapies around time of surgery without interruption and without extended recovery times.

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

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 it common with MS to feel like your eyes are trying to cross? Almost like you are working to keep them straight.

Answer:
That is not a common nor rare complaint with MS. Some MS patients do develop double vision and have problems with controlling their eye movements. If that symptom persists it may be a good idea to see a neuro-ophthalmologist for further evaluation.

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:
Do you know what the mechanism of the “internal” tremor in MS could be? I have a tremor or trembling feeling inside my body mostly on the left side including my face and chest but it is not visible. I can feel it in my teeth as if they are chattering. I also have a visible tremor in my left hand that comes and goes but is worse lately. Just wondering what the mechanism of this could be and the best treatment.

Answer:
Sensory illusions are commonly due to demyelinating injury to the posterior section of the spinal cord but could be found anywhere along the sensory tracts.  Illusions are subjective sensations that are noticed by the patient but have no outward manifestations that others can see.  Sometimes medications can help with these (see section on the site about “paresthesias”).

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

Here is My Question:
My doctor said I had MS because I had lesions in the correct area in the brain. She also stated she can see very small areas that are likely a lesion on my thoracic spine. And I have had symptoms on and off for years. It just keeps getting worse this time. I was only diagnosed a few weeks ago. She wants to wait 6 months (until I get my next MRI) to start the medication. Should I be taking something now or is this the usual process? How long should I expect this relapse or whatever to last?

Answer:
If your neurologist is confident in the diagnosis (using the McDonald criteria), then early treatment with a disease modifying therapy is almost always warranted. There may be a reason unknown to you that prompted a watch and wait approach with a scan in 6 months. I would urge you to speak with your doctor regarding your concerns and to gain clarity behind the reasoning to wait. If you are uncomfortable with the process, it is certainly reasonable to ask for a second opinion.

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

We get so many questions and try to answer them as quickly as possible, but before asking questions please enter your topic or question into the search bar at the top right of this page to see if your question has already been asked by someone else.

There have been multiple questions asked about laser removal. CLICK HERE TO READ ABOUT LASER REMOVAL AND MS

Here is My Question:
Can MS patients take whooping cough vaccine?

Answer:
In general yes. Always review with your neurologist based on the therapy you are on to ensure there are no concerns relative to your medical therapies, but the MS is not a contraindication to vaccination.
 
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:
Hi. I am 36 and I was diagnosed with MS when I was 22. I have had many relapses, but thank God I am good. My recent MRI showed no new lesions. The last MRI I had was done more then 10 years ago. Does that mean I will have a normal life. I was wondering how the MS gave me relapses but no new lesions. New symptoms but no new lesions. I thank God every day. I am just trying to understand this complicated sickness. I take fish oil vitamin d3 b12. 
Thank you. 

Answer:
No new lesions over 10 years is a good sign and reflects successful treatment and/or a more mild form of MS. It is possible to have a new inflammatory relapse but unchanged MRI (this is not common). It is important to remember that old scars from MS can produce fluctuating symptoms of MS that may feel like a relapse from the patient’s perspective but doesn’t actually reflect a recurrence of new inflammation (ie, active disease). The treating physician has to confirm a true relapse on the neurological exam.

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