Here is My Question:
MS specialist says that I do not have MS. I would like a recommendation on what kind of doctor to see next, hopefully to understand better my monocular optic neuropathy, relative afferent pupillary defect, color desaturation, brain lesions (nonspecific) and dropfoot (dx'd).

Another MS specialist? A general neurologist? Endocrinologist? Or perhaps wait and see rather than pursue answers? Although I have been waiting for a while already....and fear that we are missing something...

Answer:
I recommend you see a neuro-ophthalmologist to evaluate your optic neuropathy.  You may be able to find one who is board certified in neurology who can possibly address the drop foot issue too.  

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 live in the high desert of California. There are no Physical Therapists. How can I find someone to assist my efforts?

Answer:
Finding a physical therapist with knowledge about MS can be difficult even in larger metropolitan areas. I would recommend contacting ACT for Multiple Sclerosis, a non profit group in the Coachella Valley devoted to providing these resources to patients like you. You can learn about them at www.ACTForMS.org

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:
Is losing your breath a result of Ocrevus? 

Answer:
Losing ones breath can be an infusion reaction to Ocrevus but not a symptom expected after you are done with your infusions.

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:
Will an SSEP test show MS or can it show lesions that may have been hidden on an MRI?

Answer:
An SSEP (somatosensory evoked potential) can detect abnormalities not visible on MRI but is not specific for MS, technically challenging and often difficult to interpret unless there are obvious asymmetries when they test both sides of the body

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:
Having bad leg pain, left more than right, which starts in my quads/inner thighs and goes to my inner calves and now more recently into my feet. Feels like an aching/throbbing. In last month, it was worsened and the muscles twitch a bit and I feel it even in the morning after waking and now also after work in the evenings. Moving or walking doesn't help. I don't feel the need to move my legs at all. The only thing that helps is if the dog sits all his weight on my leg. The pains has been there for decades (I'm 38) and significantly worsened after both my pregnancies yet were completely abolished during both pregnancies.

Answer:
The cause of your leg pain is difficult to determine without an examination, although the history you provide is excellent. I assume you have MS. This type of discomfort is often related to demyelination of the central part of the spinal cord from MS or NMO.. This could also explain the improvement during pregnancy. I would expect someone with cramps/fasciculation syndrome to experience worsening symptoms during pregnancy, and I would expect someone with lumbar canal stenosis to experience worsening pain with walking or exercise

The discomfort could be caused by a metabolic disorder (e.g. thyroid ), but I suspect this would have been discovered by now. There are other muscle disorders that can create symptoms such as yours that last for decades and a neurologist should be able to help. Lastly, a condition caused neuromyotonia can cause similar symptoms. This causes difficult relaxing muscles often in the cold or with exercise with cramping, discomfort and visible muscle twitching

Good luck. A good neurologist should be able to sort it out 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:
I am currently waiting for my referral appointment to a new MS sub specialist as my current one is now not covered by my insurance. They removed me from Rebif due to high liver enzymes that would not stabilize. Would it be reasonable to try another interferon? I don't tolerate Copaxone any longer either ... scared of PML risk in all new meds. 

Answer:
As you have learned, liver enzyme elevations are common on interferon therapy. While these liver enzyme elevations are usually mild and self limiting, more significant and prolonged elevations can occur and often prompt us to recommend discontinuation of interferon treatment. Some people are able to take other forms of interferon after their liver enzyme tests normalize, but this is not a common practice today since so many non interferon treatment options are available.

You state in your message that you are concerned about the risk of PML with all other non injectable therapies, but it is not clear to me why you have this concern with most of these therapies. The risk of PML is extremely low with all DMTs except Tysabri or long term immunosuppression with drugs we rarely use anymore. There have been no cases reported with Aubagio, rare cases with Gilenya and only a handful of cases on Tecfidera, usually in people who continued on treatment despite persistent lowering of their blood lymphocyte count. Similarly, we have seen no cases with Lemtrada or Ocrevus treatment and expect the risk to be low with these treatments.

What do we mean by high or low risk? The highest risk of PML occurs with  those patients on Tysabri for more than 2 years with a JC virus antibody index over 1.5. Approximately 1 in 100 of these patients (1 %) will develop PML if they remain on Tysabri. The lowest risk patients, which includes virtually all other patients on approved DMTs, carry a risk of PML which is less than 1 in 10,000 (0.01%).

In medicine a risk less than 1 in 10,000 for a severe chronic condition is pretty low

I would keep an open mind when you discuss therapeutic alternatives with your new doctor. The best choice will really depend on the specific features of your case and your tolerance for risks and side effects

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 53 with MS and need assistance for care, but I reached a dead-end!! I am too young for assisted, independent living. But I need services with cooking, shopping, errand, light housekeeping and not living in isolation.

Answer:
I suggest you speak with your neurologist and request a referral to speak with a case manager/social worker.  This individual is trained to assist in resource allocation (where available) to assist those in need of additional assistance.  Resources may be region/location specific.

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

Here is My Question:
I am concerned about one MS lesion I have that was found in 2015. Every 6-9 months I have had another MRI scan the lesion is still showing active with contrast. It isn't doing any damage but hasn't died out. Most lesions die out after few weeks. Doctor says it is a MS lesion. Don't understand what is going on with this strange lesion and why it just don't quietly die out. Is this rare? My doctor is a MS Specialist but does not explain a lot. Feeling uneasy!

Answer:
It is rare to have a demyelinating lesion continuously enhance for that long. Persist enhancement raises questions about a vascular malformation among other possibilities. I would have a conversation with your neurologist about your concerns and if you do not get an acceptable answer, you can always obtain an independent second opinion.

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

Here is My Question:
http://mobile.abc.net.au/news/2017-02-04/new-ms-blood-test-can-identify-types-of-multiple-sclerosis/8236336?pfmredir=sm&sf54375056=1

I'm curious what you guys think of this new MS test. Is it legit? Will it be available in the united states soon? Would this prevent the need for an annual MRI ?

Thanks for everything!

Answer:
The test is very new and exciting but based on a small cohort of patients. We are unaware of any plans to make it available in the US soon.
 
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

Here is My Question:
I haven't been "diagnosed" with MS, yet, but my Dr said it's a possibility. I've noticed a lot of signs/symptoms that I've played off as this or that. I don't run to the Dr for anything really. I think tho, that it may be time to investigate further but I don't want to be a hypochondriac. About 5 years ago I had sudden vision problems, my peripheral vision was shot, everything was completely a blur. It came back about a week later and I dismissed the incident. About 6 mo the ago the right side of my face went completely numb. Like a line had been drawn down my face and numbness took over the right side. It lasted for about 3 weeks.

The Dr said at that point that I could have MS but we were going to treat as Bell's palsy because that would be more common. The medication had no effect and my face stayed numb for about 3 weeks. About 3 months ago I had pains in my ribs like labor pains. I couldn't breath or talk or move it hurt so bad. At that point I went to the hospital for fear something was seriously wrong (still not linking MS at this point), they said the cartilage in my ribs cage was torn and to be more careful. Home I went. I get horrible headaches since I was a child but about 5 years ago I was also diagnosed with cluster headaches as well.

Still not linking anything until about 2 weeks ago I noticed that I stutter and I never use to, I drop things like I just let go of them, heat (has always bothered me) makes me feel weak and tired and my face tingles like it wants to go numb again. I've got this big hump at the base of my neck that I assumed was bad posture but now I wonder. My neck bothers me a lot and sometimes if I turn my head too fast I get this awful sharp burn in it like fire. There are other things I'm forgetting, I'm sure, but these are a few that make me wonder if maybe I should look into MS further with my Dr or if I'm just being a hypochondriac. Any opinions would be gratefully appreciated, thank you so much. 


Answer:
The first thing to do is see a neurologist. By the way Bell’s palsy doesn’t cause numbness in the face, so I know you have not seen a neurologist yet. I can only tell you that some of your symptoms are suggestive of MS, but your overall story doesn’t sound like MS. You will need a good neurologist to take a history and examination from you before you even consider this diagnosis.
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 have been taking Tysabri for over 5 years it worked GREAT. I felt normal again! Just tested positive for the JC virus. My New doctor (5th one) who is new at her job wants me to take Aubagio. I'm scared to death of a relapse, it does not sound as good or strong at Tysabri! I have been on Copaxone, and Rebif and neither worked. What do you recommend? Does she just want to try it because its new? Help please!! 

Answer:
I have reservations about transitioning from Tysabri to aubagio.  The ~50% risk of having rebound inflammation within the first 6 months off Tysabri requires attention.  In my opinion, aubagio is unlikely to provide the degree of protection in that critical period.  Gilenya, Tecfidera, and rituximab (or Ocrevus) would be better options for a transition.  From a PML standpoint, the risk with rituximab or ocrelizumab appear to be the lowest risk (although not zero) compared to Tecfidera and gilenya.

Eventually, Aubagio may be OK for your MS, but I do have reservations about using it to transition off Tysabri.  I suggest you discuss with your neurologist and share your concerns.

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.