​Here is My Question:
Should I start Tysabri with JCV index of 2.21?

I am 30 yr old caucasian male, I was diagnosed sept 2016 with MS. I had JC index of 1.82 and declined to start Tysabri or any meds. Jan 2017 2 new T2 lesions on brain, 4 total T2, now a JC index of 2.21.

I am willing to start meds now, Tysabri for 12 months is what's being recommended by my nuero. Her argument against other meds are that they are not as effective and we need to stop new lesions.

Are there any other meds you could recommend that are effective but not as risky for PML??

Thank you!!

Answer:
I agree with the decision to treat your MS (there are multiple blog posts on this site that detail the benefits of treating and treating early for MS).

The choice of disease modifying therapy (DMT) can be a little complicated and comes down to how aggressive your MS really is (which you allude to in your question).  Other considerations depend on certain prognostic factors of your MS.  Male gender tends to have a more difficult disease course than women (on average).  Other considerations include a history of motor attacks (ie, weakness or clumsiness), frequent and recurrent attacks early on, presence of spinal cord or brainstem lesions, etc.  These are poorer prognostic factors which can argue for use of a highly effective therapy such as tysabri.  However, your risk for PML is higher than an individual with negative JC virus antibody titers.

Because I do not know you and haven't had the opportunity to examine your or review your imaging, I cannot realistically suggest a different course for your MS than what has been suggested by your neurologist.  If you are a candidate for a highly effective therapy, the off label use of rituximab 500mg would be an option for you.  This is very similar to the soon to be approved medication called ocrelizumab.  The estimated risk of PML is ~1:25,000 (based on treatment of rheumatoid arthritis patients on rituximab).  Your risk with Tysabri for PML is much higher than this.  I'd suggest reviewing options with your neurologist as there are 15+ FDA approved therapies now.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
KP Fontana and Riverside Medical Centers

Here is My Question:
Does Lemtrada work on spinal lesions as well as it does brain lesions? Thank you.

Answer:
Lemtrada, similar to the other DMTs, target the immune system at different points to reduce the likelihood of new lesions or inflammatory events throughout the nervous system (including the spinal cord). Lemtrada (and the other DMTs) have never demonstrated the ability to repair old lesions (which the nervous system does in a limited way).

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

Here is My Question:
I have been diagnosed with fibro, which I reluctantly concur that I have but I have recurrent weakness in the legs (primarily thighs), a slow walking pattern and pain in my legs. I am 54 making this atypical but have never been tested dor MS. I really dislike diagnosing myself by using the web but for the last 5-7 years it's seems every time I look up symptoms it comes with a preliminary diagnosis of MS. Docs have never suggested this. Should I suggest it to them or find different docs?


Answer:
Since the inflammatory event of MS can occur anywhere within the brain, spinal cord, and optic nerves, the resultant symptom can be almost anything.  This is why MS typically comes up as a "need to investigate" possibility for patients experiencing a wide variety of symptoms.

If you wish to have this investigated, you should see a neurologist, preferably a fellowship trained MS specialist who will apply the diagnostic criteria and consider alternatives as well.  Sometimes all that is needed to answer your question is a consultation with a specialist and nothing more.  Sometimes additional evaluation is needed with imaging, blood testing, etc.

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

Here is My Question:
I am a 55 year old female and have had MS for 13 years. I was started on Rebif but stopped because of skin issues with injections, started on Tysabri which was stopped because I'm JCV positive and was on Tysabri for 2 years, and then started on Aubagio which I've been on for 3.5 years. I feel like my symptoms have slowly been getting worse so my Neurologist recommended we try Rituximab. I am concerned because I know Aubagio lasts in the body for a long time. Do I need to wait a certain time period before starting Rituximab or do one of those elimination protocols? Also, because of my age and the suppression of the immune system Rituximab causes, my Neurologist is also recommending the Shingles vaccine before I start Rituximab. Is that safe for me considering I'm still on Aubagio? 
​
Answer:
Rituximab is an excellent option to treat underlying MS.  However, no disease modifying therapy will guarantee improvement in symptoms (they do cut down on inflammation occurring due to MS).  I'd suggest you speak with your neurologist about what he/she expects to gain from using rituximab and develop a plan together to make sure that you are responding to the medication.  This usually means semiannual clinic visits and occasional MRI scans.

I would recommend the cholestyramine elimination protocol and have your terifunomide level checked afterwards.  

I always check a chicken pox (VZV titer) before ordering rituximab.  If the titer is low, you should have the vaccine first and then wait at least a month before starting rituximab.

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

Here is My Question:
I have had about three MRIs. All of which show that I have white spots on the brain but I was told that they were not where typical white spots would be for MS. I just had a repeat MRI and my neurologist told me today that there were a few new white spots. He said that there were a couple that were where some MS spots would be but he didn't feel that he could diagnosis me with MS based on a few spots. So now I am going for a spinal tap. My question is given the information, what does the likelihood of me having MS look like? I just need to prepare myself. He did say that it would be mild and he felt it would be manageable but I still want to know my odds going into the spinal tap. Any input and advice is greatly appreciated.

Answer:
When MRI is non-diagnostic (i.e., does not fully meet criteria), a spinal tap can be very helpful.

Approximately 90% of patient with multiple sclerosis will have 2 or more oligoclonal bands in that fluid.  This indicates compartmentalized inflammation in the nervous system that is not seen elsewhere in the body (a hallmark of the disease).  The prognostic course of MS cannot really be determined based on spinal fluid analysis.  The procedure itself is simple and can be done in the office.  Rarely, a unique headache can be experienced afterwards that comes on when you sit or stand up but goes away when you lay flat.  If experienced, this usually goes away within the first 24 hours; however, if it lasts longer, another procedure called a blood patch can cure the headache.

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

Here is My Question:
I'm looking for a non opioid non weight gain pain control medication.  

Answer:
This topic is a little more complicated because there are different causes (and sources) of pain.  In MS, we focus on neuropathic pain (i.e., pain originating from a scar of multiple sclerosis).  

Unfortunately, medications to treat this type of pain can encourage weight gain.  Depending on the type of neuropathic pain, medications such as trike oral, topiramate, or keppra could be used, but they have to be used appropriately.  If the pain is not neuropathic in nature but is related to musculoskeletal pain, physical therapy can be helpful.  

As you can see, more information is needed to determine a treatment strategy.  In complicated situations, pain centers can be utilized which use a multifaceted approach of of medication, physical therapy, and wellness approach to tailor care.

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

Here is My Question:
I have been taking Tecfidera for three months. I take a stomach protecter, an aspirin too, and take Tecfidera with food, but I still have terrible stomach pain, diarrea and bloating...it is driving me crazy....

Answer:
I'd suggest looking at the prior blog about Tecfidera and side effect mitigation (see link below).  There is a section about GI side effects.  If this is insufficient for your side effects (and you find them unbearable), then you may need to discuss transition to another therapy with your neurologist.

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/thoughts-on-tecfidera

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

Here is My Question:
Are IV steroids ever used to treat minor symptoms? I have numbness and some pain in my lower legs. I still walk fine but the sensations are very uncomfortable. Would IV steroids help with this?

Answer:
IV steroids are reserved primarily for clinically significant attacks that affect motor function (ie weakness, incoordination, and difficulty controlling bowel/bladder function).  Sensory attacks many times can be managed without steroids; however, there are exceptions. 

The sensory symptoms you are describing are less likely to reflect new inflammation (ie, a new attack of MS), but rather fluctuating symptoms as a result of older scarring to the nervous system.  An evaluation by a neurologist (or speaking with a neurologist who knows your disease is best). 

Symptomatic treatment is usually indicated (this is treatment other than steroids) for your current issues. You can read more at: 
​http://www.healthcarejourney.com/numbnesstinglingaltered-sensation.html

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

Here is My Question:
How often, if at all, should a follow up spinal MRI be performed if a spinal lesion has already been found? I've had no new visible brain lesions for a few years but don't know the status of my spine. 


Answer:
You will likely receive a different answer to your question depending on who you ask.  In my mind, the organizing principle behind when and what to image after the diagnosis has been made is to monitor the effectiveness of the therapeutic being used.

Approximately 90% of MS lesions on the brain scan are clinically silent with no perceived associated symptom which you'd be aware of.  Quite the opposite is true with the spinal cord.  When a new lesion established itself in the cord, symptoms invariable arise that you perceive and the neurologist can confirm on your exam.

If the purpose of cord imaging is to look for disease activity, I would rely on the symptoms and neurologic exam first before jumping in the loud clanking machine.

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

Question:
​What do you think about the Fasting Mimicking Diet?

Answer:
The fasting mimicking diet (FMD) is an interesting addition to the paradigm of the “anti-inflammatory diet”.  By using a low calorie and low protein diet for brief periods, researches hypothesize that this MAY help the MS disease process.   Earlier this month, Dr. Longo (from USC) published a paper on this topic where they first studied the effect of FMD on mice that have been given a condition called EAE (which is the closest disease state that appears like MS in mice).  They gave this diet to mice for 3 days every week and found that when compared to a control group of mice (i.e., a group that had a regular mouse diet), that the FMD mice had less disability and even 20% of the mice had complete reversal of symptoms.  They also found that the FMD mice had an increase of T-regulatory cells (which is a good thing), and a reduction of angry/inflammatory Th1 and Th17 cells (also a good thing).  Interestingly, they also found that the FMD mice appeared to have improved remyelination with a promotion of oligodendrocyte precursor cells (the cells that make myelin).

So, it appears that the FMD is helpful in mice that are given a disease that looks like MS, which is very interesting.  The next question is, will it help humans with ACTUAL MS?  The even more basic question is… is the FMD safe for humans to submit themselves to?

Dr. Longo’s recent paper reported a feasibility study where 60 patients with MS were randomized to a “control”, “Ketogenic”, or “FMD” diet.  The ketogenic diet is a high fat diet used to help treat children with difficult to control seizures, and served as a reasonable comparator arm in this feasibility study.  The patients were assigned these diets for 6 months and followed by the researchers.  What they found was the the diets appear safe; however, only 60% of the patients in the control diet group complied with the protocol whereas 100% did in the FMD group.  About 78% of the FMD group reported some adverse event (usually an airway infection, i.e., the cold) or a UTI.  The researchers also noted that the white blood cell count of patients being treated with FMD had a reduction of white blood cells by ~20% which then rebounded to normal after switching off the FMD diet.  Interestingly, they also saw a “mild reduction in” disability among patients using the FMD diet.

This is very interesting.  Dr. Longo and his colleagues have shown that mice with a disease like MS are benefitted by the FMD and that humans with MS appear to tolerate a FMD diet.  There is preliminary data suggesting the FMD may be beneficial in what matters for MS patients (namely stability/improvement of disability).  

So, what needs to happen now?

The short answer is:  1) this data needs to be replicated so we can have confidence that these preliminary findings are real, and 2) we need more data on the impact of FMD on actual patient with MS which would include not only neurologic exam findings, but blood monitoring (to determine what actually happens in the body when exposed to the FMD) and to assess FMD’s impact on inflammation in the brain and spinal cord in MS patients (i.e., through the use of MRI).

What is not clear based on the paper is the exact make-up of the diet used in the protocol.  Undoubtedly, the researchers are planning the next phase of testing.

For those interested in participating in research such as this, I would suggest you keep your eye on www.clinicaltrials.gov and search for ‘fast mimicking diet’.  At the time of this blog post, I do not see any actively recruiting trials, but I suspect that will change in the future.  On the .gov website you will find contact information for future studies as well as proposed locations for the research.  I would also suggest you discuss with your doctors about the safety of such a diet since everyone is different and other diagnoses for a given individual may make such a diet more risky.

Hope this helps,

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

Here is My Question:
I would like to know if there are no active lesions in the brain, how come my left leg is getting worse?

Answer:
Demyelinating events anywhere along the circuit between the cortex (surface of the brain) through the brainstem and in the spinal cord can lead to weakness in the leg.  A stable MRI of the brain doesn't really help answer the question you are asking.  Your neurologist should be able to help determine if a spinal cord event has occurred which can also cause weakness. 

Another possibility is that the MRI is not sensitive enough to see the demyelinating lesion to explain the problem.  As sensitive as the MRI is, it is not perfect.

Yet another possibility is no new lesion (or MS plaque), but degeneration of the circuit due to prior inflammation.  This can occur in what is known as secondary progressive (or progressive) MS. 

This answer is assuming that MS is to blame for the weakness.  You doctor can also evaluate for other potential causes (if appropriate) given your situation.

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

Here is My Question:
Can I donate plasma?

Answer:
Ultimately, you would need to call the company collecting plasma donations to confirm your eligibility.

Having MS is not a disqualifier; however, some MS treatments may mean you cannot donate.  Some patients on biologic medications for rheumatologic disease (that targets the immune system) have been barred from donation by some repositories.  Chances are you will be able to donate, but you will need to go through an intake exam with the organization collecting the plasma.  Calling ahead and asking this question would be advised.

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

Here is My Question:
Stiffness with MS, especially legs and arms...Is this common and what is the reason? 

Answer:
Stiffness, muscle spasms, and tightness (i.e., spasticity) is not uncommon in MS.  This is especially true when there is a significant burden of disease in the spinal cord.  The spinal cord carries axons that provide an inhibitory (relaxing) signal to the motor neuron that then goes to the muscle.  When the inhibitory signal is affected, the motor neuron is left unchecked which can manifest as muscle tightness.

A simple treatment includes stretching.  Other medical options can include baclofen, tizanidine, klonopin, etc.  These medicines, if used, need to occur under the direction of your physician.

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

Here is My Question:
If I have MS, can I get laser hair removal, considering the lasers use heat technology, I was thinking they might cause relapses or otherwise not work well with MS medications.

Answer:
Heat doesn't cause relapses, but can bring out prior symptoms from old multiple sclerosis scarring.  I have had patients undergo laser hair removal without incident.  There is no medical contraindication for laser hair removal from an MS perspective.  

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

Here is My Question:
I had a mild flare beginning of February and took 3 days solu medrol. A few days later had a feeling of numbness from head to toe so did another round of solu medrol and still the same. I'm on Avonex but they are switching me to Copaxone. My question is will this go away or is there anything else that can be done? It's interfering in the way I do things. I'm a cashier and currently on a medical leave because my hands are numb. Any ideas? Thanks.

Answer:
There are 2 topics/questions in your submission:  1) disease modifying therapy effects and 2) symptoms.  Briefly, the decision for when to switch from drug x to drug y is based on clinical course on drug x as well as MRI surveillance of the MS disease.  Whether you will do better on copaxone than avonex, is anyone's guess.  I would add that if you have spinal cord lesions from the MS, then medications like Avonex (not Copaxone) may aggravate the symptoms that come from the spinal cord lesions (in my experience).

Regarding your symptoms, if your problem is numbness (ie, can't feel anything) then time is likely to be required (to allow recovery).  If you are having problems with feeling abnormal sensations (ie, burning, tingling, etc) that are overwhelming, then your doctors can use medications temporarily to help take the edge off those sensations (medications like gabapentin, Elavil, etc).  Numbness (or complete lack of sensation) won't be helped by those medications, but time would be required for your nervous system to recover and re-establish connections around your MS lesion that cause the symptoms in the first place.

If you are also clumsy in the hands (ie, not able to reliably operate the register), then your doctors may use physical therapy and/or occupational therapy to hasten recovery.

Hope this helps.  

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

Here is My Question:
I have MS, essential thrombocythemia (ET) and hemochromatosis. I take hydrea for my ET and Gilenya for my MS. My problem is my lymphocytes are .22 and my ast/alt are 4.5x the upper limit. I don't want to stop taking gilenya. It seems the two meds are amplifying the immune system suppression. I have read several cases of taking GILENYA every other day. Any opinion on doing that? Or should I medicate different for my ET? I only take hydrea 500mg every third day.

Answer:
Essential thrombocythemia (ET) is a condition where the megakaryocyte (cell in the bone marrow) release large amounts of platelets into the blood stream to aid the body in blood clotting (and avoiding bleeding out).  ET is a condition where you have way too much platelet production that can lead to several unwanted problems with blood clots, among other things.

There are a few early studies of the use of S1p modulation (this is the target of Gilenya) that may affect the differentiation (development) and activity of megakaryocytes.  Animal models suggested that S1p modulation may increased platelet counts.  On the other hand, there have been reports of lowering of platelet counts on gilenya in patient with multiple sclerosis.  If this is the case for you, then Gilenya may very well be playing a dual role for the MS and ET.  When reviewing the literature, I am not aware of any data that proves Gilenya helps ET.

The bottom line is that Gilenya, like our other therapeutics, are not benign and can cause unwanted problems (in your case, the liver function tests are quite elevated).  I'd strongly suggest that you speak with your neurologist about your unique situation (and your hematologist) to determine if Gilenya is helping the ET.  If the answer is "we don't know" or "probably not", then you may want to look to another DMT if your liver function tests continue to stay elevated.  However, as you point out, we do use Gilenya on an every other day basis with good results (this is off label) for many patients with MS.  That should also play a role in your doctors' (and your) decision making on transitioning to another therapy.

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

Here is My Question:
Hello I have MS And on January 5th this year I had laminectomy surgery on my back. Does MS slow my recovery down? 

Answer:
Here is a past Q&A that you can read to answer your question:
​http://www.healthcarejourney.com/q--a-for-virtual-ms-center/disease-modifying-therapies-and-outpatient-surgery 

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

Here is My Question:
I have a cousin that swears she has MS but has never been tested for it. Can I just look at you and say you have MS even when there has been no testing? She has had MRI's for something else but they don't have any lesions, is it possible she has MS or no?

Answer:
Please read our page on diagnosis for MS. Only a neurologist (preferably an ms specialist) can render the diagnosis.

Another Q&A that would be helpful to read would be this...READ MORE

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

Question:
What is the difference between lack of fine motor skills in the hands between arthritis and MS?

Answer:
Fine motor deficits in arthritis is due to pain and stiffness (restricted motion) in the joints.  With MS, the joint isn't affected, but the nerve signal to the muscles in the hand and arm are affected which can lead to clumsiness due to poor coordination of the arm and hand.

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