Here is My Question:
I am a Bangladeshi physician and currently working in a medical university Dhaka, Bangladesh. I was diagnosed with multiple sclerosis in 2017 and since then was on Rituximab. I missed the schedule of rituximab and my last follow-up MRI up scan of my brain has depicted a asymptomatic haemorrhage in right frontal lobe and microbleeding in the both MCA territory. No active demyelinating lession. Eye examination revealed active retinal Vasculitis (venulitis). My question is...Can multiple sclerosis be relapsed as CNS bleeding and retinal vasculitis?

Answer:
No, an MS relapse would not consist of CNS bleeding or retinal vasculitis. You would need to find out an alternative diagnosis to explain the CNS bleeding and the retinal vasculitis.

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:
I've been experiencing pain on my right side of face. Starts in my cheek area, up to temple and forehead, eyebrow area and into my scalp. Is not a deep pain but hurts if I touch my skin, my hair even hurts. I get a sharp pain in my temple area that feels like an ice pick and can feel it in my ear. It's going on 4 days now, interrupting sleep because it causes discomfort if anything touches my face. Any ideas for me?

Answer:
You should be evaluated by a physician about this concern. Allodynia (neuropathic pain to touch) can originate from many different potential causes. If there is a rash (and sometimes even without a rash) it could be due to a virus such as VZV (zoster/shingles). If VZV is to blame, prompt treatment is very important to prevent potentially serious neurologic complications (particularly when it involves the forehead). MS can be manifest by trigeminal neuralgia; however, your description is atypical for this.  Atypical facial pain can occur as well, but would require further evaluation by your doctor.  Sometimes symptomatic medicine can help allodynia (including gabapentin, pregabalin, amitriptyline, etc). Your physician can discuss this with you in more detail.

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

Here is My Question:
How do I know if my superventricular tachycardia is from MS? If it is, will an ablation still be an option?

Answer:
Supraventricular tachycardia originates from the heart muscle (atria where the pacer is).  This is not caused by MS.  The question regarding use of ablation should be answered by the cardiologist.

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

Question: I understand that service dogs for MS patients help with balance and physical needs but can they sense a pending relapse. I suffer from MS relapses from stress, overexertion and heat. Can a service dog sense the changes in your body that occur when your body has hit that point when you need to stop and rest to avoid a relapse? My relapses cause me debilitating fatigue, muscle stiffness and mental cloudiness.

Service dogs for individuals with physical disabilities like MS can offer enormous benefit. They will pick up whatever you may drop, go fetch what you need. These tasks that they provide keep you safe and help you to conserve energy - this helps prevent you from falling and helps you save those precious bits of energy for when you really need your power.  In addition, a service dog over time will be your best friend and will be there for you no matter what. With most young dogs, this takes time. Just like with humans, it takes some time to build a strong and enduring relationship, and it goes without saying that some dogs are more intuitive than others regarding the needs of their recipient. 

However, despite these benefits, and I don’t minimize them - these dog are not trained to predict an impending relapse - they will sense if you’re not feeling well, but they have no power to assess your neurological function before you have symptoms. They know when you’re sad, when you’re feeling crappy, when you need them - and they will be right there at your side, looking up into your eyes and snuggling with you. There is nothing better than that for most people. 

Ellen Lathi, MD
Director, The MS Center at St. Elizabeth's Hospital and the MS Service Dog Program

Here is My Question:
Hello. I've been feeling hot with increased tingling in my fingers. It all started a week ago when mild flu symptoms started. I took allergy medicine and I'm better now (flu wise).
Is feeling hot and tingling a sign of an MS attack? What should i do?

Answer:
You could be experiencing a pseudo-relapse or the emergence of symptoms (particularly positive sensory phenomenon like tingling) in the setting of an infection. Urinary tract infections are a common cause but common viral infections can also be responsible. Please see your doctor to be evaluated. 
Good Luck

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

ere is My Question:
Probiotics in general are not recommended in cancer patients who are immunocompromised due to the potential of probiotics to cause infections r/t to the bacteria in the probiotics. Would that be true for MS patients who are on disease modifying drugs, especially if the WBC and absolute neutrophils have dropped with therapy? It seems patients on DMD's are potentially at risk for infection and probiotics might increase the risk. 

Thanks.

Answer:
Most individuals are not at risk for infection due to probiotics; however, your point that this may not be the case in individuals on disease modifying therapies is valid.  With that said, my review of the literature does not address this question very well.

Early clinical research with small cohorts seem to be well tolerated among MS patients, and in some cases seem to influence the expression of the immune system in a favorable way (https://www.ncbi.nlm.nih.gov/pubmed/29679417).  More research with larger cohorts and longer duration of exposure to probiotics will be necessary to better understand the risk of infection in this setting of MS on disease modifying therapy.

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

Here is My Question:
Why do my legs feel so heavy?

Answer: 
Legs feeling “heavy” is common with many disease states and also in people who overexert themselves. In people with MS heaviness in the legs is often a result of abnormal activation of the muscles by the central nervous system. 

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 on Tysabri for RRMS for about 9 years. Slowly my symptoms have worsened especially my short term memory and cognitive issues, paresthesias, fatigue and depression.

Recently my world renowned neurologist said to switch over to Ocrevus, known for success with primary progress MS by the Opera1 and Opera2 studies but I have not found any studies comparing Ocrevus with Tysabri for RRMS.

Another world renowned neurologist here in NY switched her female patient to Ocrevus who has RRMS with exactly the same symptoms as I do.

Her symptoms are now gone after 1 year!

I have only had the first 2 half infusions of Ocrevus without reactions or benefit. Now my neurologist has switched me back to Tysabri. Any idea why? Any study showing Ocrevus being better than Tysabri in RRMS? Our lab work is essentially the same.

Answer:
You are correct that there is no data of comparison.

On caution I would have is the fact that you were exposed to Ocrevus (which would give you one of the risk factors for PML among Tysabri users.... Ocrevus is cytotoxic).

Not sure why the switch back to Tysabri. You would need to review this with your neurologist who has more of the facts about you on hand.

Keep in mind that Tysabri, Ocrevus, etc...do not treat symptoms. They were never tested as a symptomatic therapy, so I would be very cautious in making any disease modifying therapy changes due to symptoms (transition should be based on new relapses, changes on MRI, or progressive disability).

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

Here is My Question:
I am a 64 year old female who has been on Aubagio for two years (stopped Tysabri d/t JC+, had anaphylactic reaction on Copaxone, worried about PML so chose Aubagio). I have an unintentional weight loss of 11 pounds between 2/22 and 6/22.

All of my work up has been normal--labs, exam, colonoscopy 12/17. Looking back, I realize that I started to lose my sense of taste and appetite in January or February. I'm not hungry and realized that it's because nothing really tastes good. Could this be related to the Aubagio? There isn't really any other explanation. Thank you for this wonderful site. 

Answer:
I am not aware of a correlation with Aubagio and smell/taste.  On review of the literature and reviewing the drug labeling, there is no mention of a correlation.

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

Here is My Question:
What is the difference between a MILD and MODERATE MS lesion burden as shown on my MRI? 

Answer:
We don’t have a formal definition of degrees of MRI lesion burden. Generally we talk in terms of lesion Number in clinical practice since lesion volumes (part of the calculation of lesion burden) is not typically measured.

For lesion numbers at the onset of the disease a rough rule of thumb is that < 9 lesions (unless large or confluent) is a mild burden.

Hope that 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:
How can you tell when the MS seems to be changing from RRMS to Secondary Progressive MS? The bangers are gone but there is a slow gradual downslide.

Answer:
It can be very difficult to determine if you are developing secondary progressive MS, mostly because this is a clinical diagnosis that is usually made after a period of steady worsening in your neurological examination and function over more than 6 months. Part of the problem is that MS relapses tend to disappear over time and, if you are sufficiently old (generally over age 60) progressive worsening without relapses can be a result of an accelerated aging process on top of prior damage to the nervous system from MS.

It is best to define Secondary progressive MS in people with steady worsening of their exam and function over more than 6 months in the absence of relapses. If relapses are present as well, this is just severe relapsing MS

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 there anything that can be done for the discombobulated feeling in the head. A feeling of always having that bobble head feeling.

Answer:
A "bobble head" sensation can be caused by many things and requires an evaluation by a good neurologist.
​
The possibilities include:
1. A poorly functioning vestibulo-ocular reflex common in MS patients
2. Nystagmus
3. Head tremor
4. Various drugs

Hope this helps to get you started.

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

Question:
​I've been on Avonex for 5 years. I looked at some of the Avonex side effects recently and noted that I suffer from at least 4 of these ie cold intolerance, a heart beat that occasionally beats irregularly, vision changes and swelling of the hands and feet. Should I change my injection? I'm reluctant to as so far the MS has progressed at a slow rate.

Answer:
It is not likely that any of the symptoms mentioned are related to your Avonex injections. The only way to know would be to stop the Avonex for several months and see if the side effects disappear.

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 can't lift my arm high or put it behind me without pain. Is this due to my MS? I was diagnosed 10 years ago and they discovered I have had it for twenty plus years.

Answer:
Pain on lifting the arm or putting it behind your back is usually due to a shoulder impingement syndrome or rotator cuff injury. 

Weakness in the arm (i.e. from MS or anything else) can led to bursitis in the shoulder which causes pain on elevating the arm.

You need to see a sports medicine or orthopedic doctor for diagnosis and treatment.

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 with Nonprogressive relapsing multiple sclerosis in March 2017. During that time I found out I was pregnant and not able to start therapy. Now, it is time to choose a therapy to go on and I am having trouble deciding. I recently had an MRI and it showed new activity and my symptoms are optic neuritis. I am a 24 year old woman looking to get pregnant in about 1-2 years. The two therapy's that have been mentioned to me are glatopa and rituximab. I was told by my doctor rituximab would be the better choice if I want to continue breast feeding my current baby and if I plan the infusion correctly it would be safe for me to be pregnant. However, when doing some research about rituximab, I am nervous to say yes. When reading I saw there was some controversy to rituximab actually helping as it is unknown what role the Bcell plays in MS, as well as the higher risk factor there is in comparison to glatopa. I guess the simple question is, with my condition and my future plans on expanding my family and wanting the ability to breast feed. What is the best therapy for me?

Answer:
There is no evidence that glatopa is harmful either during pregnancy or with breast feeding. There is also some evidence that exclusive breastfeeding (no supplemental feeding allowed) is protective against post partum relapses.

The most appropriate therapy depends on your risk factors for frequent relapses and/or the early development of more severe disease. 

Rituximab is a great therapy but long term therapy would be more risky than glatopa and an odd choice for someone naive to therapy unless you had a lot of risk factors. Then again, if you had a lot of risk factors why would they be considering glatopa.
​
Some Rituximab is likely to get in the breast milk but not likely to get into the babies circulation. 

There are many other choices as well, but I would tend to stay away from small molecule therapies (i.e. pills). These tend to go everywhere in the body and some would require more careful and timed discontinuation before the next pregnancy.

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 have had MS for 15 years and no episodes for 10 years, but since April I have had tingling and numbness on complete right side head to toe. But more so in right hand/arm. Only vitamin D for meds right now, so not a side affect problem. Is there something I can do to help along recovery while I wait for a doctors appointment in 2 months? And, would this be permanent?

Answer:
It certainly sounds like the numbness and tingling on your right side that began in April could represent an MS relapse. We usually do not treat MS relapses after a month unless the symptoms continue to progress. Most MS relapses spontaneously improve within 3 to 6 months. You definitely need to get in to see your 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

Here is My Question:
I was told today by a nurse that my diagnosis has changed from MS to Opticospinal MS but she had no additional information. I have tested negative for NMO twice, I have a moderate lesion volume load on my brain, my thoracic MRI was clean, and no lumbar MRI was done.

I am so confused about this diagnosis. Is this part of MS or NMO? What is the difference in prognosis? They plan to start me on Ocrevus. 

Answer:
It is hard to comment on your diagnosis without reviewing your medical history and MRI scans in more detail.

Opticospinal MS is a term that was used in the past to describe a pattern of MS patients who now would probably be classified instead as having Neuromyelitis Optic Spectrum Disorder (NMOSD).  Patients can still meet the diagnostic criteria for NMOSD while having negative blood tests for the NMO antibody test. 
 
I recommend you ask your questions directly to your neurologist to get better clarification about your diagnosis.
 
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

Question:
I have recently started working in a job that has lots of walking and standing. I have for 15 years had numbness and tingling in my right foot and since I started working that pain is much more frequent and distracting. Are there off label uses for Botox to help with nerve pain in my feet?

Answer:
Botox has no effect on neuropathic pain or abnormal sensations in the limbs. The effects on migraine pain are indirectly mediated through cranial musculature and not relevant to your pain.

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

Question:
I live on the east coast where the weather is most unpredictable! my question is to Dr Kinkel since he lived here and is familiar with the ups and downs of the temperature.

When symptoms of weakness come on when the weather is humid, is it ok that my legs get so weak that I can't stand up for more than 5 minutes or so? What can one take to slow down this progression of what I'm told now is secondary progressive? Treating the symptoms of weakness with exercise and physical therapy is not seeming to be enough! Thank you for your answer in advance. 

​Answer:
As you know hot weather tends to make MS patients melt (weaken) especially if is humid and cold weather makes you stiffen.

The best solutions is order are:
-air conditioning
-cooling vests, hats or collars
-avoiding medications that can raise body temperature in hot weather. Medications to control bladder/urine symptoms, depression and pain all can make it more difficult to sweat and eliminate excess heat. Just getting rid of these medications can improve your symptoms
-a trial of Ampyra if the above fails

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