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Welcome to the Virtual MS Center!

Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
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Can you switch from Rebif to Tecfidera right away?

1/29/2018

 
Here is My Question:
Regarding the time from stopping Rebif to starting Tecfidera. Can you start the change straight away?

Answer:
When changing from any interferon (including Rebif) to Tecfidera, first make sure that your absolute lymphocyte count is above normal levels and there are no abnormalities in your liver transaminase levels (also referred to as Liver Enzyme tests). These are standard lab tests that your doctor should have checked before starting Tecfidera. If these and other routine lab tests are normal there is no reason to wait between stopping the interferon (Rebif) and starting the Tecfidera

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

Do Ocrevus and Rituxan work in the same way?

1/29/2018

 
Here is My Question:
Ocrevus to rituxan...does it work in same way?

Answer:
Great question.

Both Rituximab (Rituxan) and Ocrelizumab (Orevus) bind to the CD20 receptor on B Cells and kill these cells; We know of no problems with people who have switched between these treatment. In fact there are already people who have switched from Rituximab to Ocrevus and some who have switched from Ocrevus to Rituximab without any problems. The switch is usually because of an insurance issue; the health insurer will cover one but not the other.

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

Can I still play basketball if I have MS?

1/23/2018

 
Here is My Question:
I’ve recently found out that I have MS. I play college basketball. My only symptom right now is optic neuritis. For now, I’m not supposed to play basketball until I see a specialist in a couple of weeks. What are the chances I do or do not get to play college basketball again? Would they tell me that I can’t play anymore, or let me try and take it day by day?

Answer:
Most cases of optic neuritis have a great recovery and you should be able to resume playing basketball very soon. You may have some problems with depth perception and tracking the moving ball as well as you did prior to your optic neuritis however.

I highly doubt you will be told you cannot play anymore.

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

Side effects and medications to treat MS symptoms

1/23/2018

 
Here is My Question:
I have reduced Amitriptyline from 100 mg to 75 mg for neuropatic pain (MS). I reduced it a few weeks ago and noticed my weight is back to usual and I have less burning in my leg. Would staying on 75 mg keep my weight the same or will it start to increase again? Most importantly what other medications would be better for MS symptoms? I tried many and always get the side effects. Any advice?

Answer:
Unfortunately, side effects come with the territory of symptomatic MS treatment.  Neuropathic pain as you describe is not uncommonly treated with elavil or gabapentin.  Increased weight can be an issue with both.  It is hard to predict who will experience a specific side effect and to what degree (although side effect severity tend to be dose-dependent).  

With all MS symptomatic therapies, each patient has to weight the side effect vs. benefit analysis and decide for themselves if the symptoms they are attempting to treat are severe enough to trade them for potential side effects.  

I would also add that symptoms from MS can fluctuate, and even though your symptoms may be severe for a certain period of time,  the possibility remains that they will improve on their own and you may not need to continue with the medication.

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

Does Copaxone Cause Hallucinations?

1/23/2018

 
Here is My Question:
Is it possible to have hallucinations if I have been off medication for only a couple weeks? I take Copaxone and think I may have a couple. Is this from withdrawal of medication or MS being active?

Answer:
Hallucinations are not associated with multiple sclerosis, copaxone or coming off copaxone. We would recommend seeking care with your physician as soon as possible and discussing.
 
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

How Much Can Results Vary Between Two Different OCT Scans?

1/23/2018

 
​Here is My Question:
I had an OCT scan done a few months ago, a year after sudden loss of vision in my left eye. The results showed that the RNFL thickness was 82 in my left eye and 92 in my right eye. 

I saw a neuro-ophthalmologist earlier this month and that OCT scan showed a thickness of 82 in my left eye and 86 in my right eye. She told me that my first OCT scan looked as if I had had at least mild optic neuritis but the newest scan shows that both nerves are thin, making the diagnosis of optic neuritis less likely. She hypothesized that my thin RNFL could be congenital but I don't think so as I have really good vision, better than 20/20 and optic nerve hypoplasia varies from total blindness to near normal vision. I can't find any research that shows you can have better than normal with ONH. 

I'm wondering if I may have a subclinical attack in my right eye between both scans, accounting for the 6 point difference between each scan in my right eye. Is it normal to have two different OCT scans vary that much without the eye undergoing damage? 

I also had a VEP test done and the low-frequency latencies were 111 in my left eye and 113 in my right eye. This, I guess, is within normal range. I did, however, take an oral steroid pack and my last pill was the day before the exam. Could oral steroids have any bearing on the VEP test? I didn't even think to mention that I had been taking them as I was really sick and I just wanted to get through my appointment and go home. 

Answer:
I would say that the diagnosis of optic neuritis is a clinical diagnosis and that the thinning of the OCT helps confirm the diagnosis, but not necessarily enough to make the diagnosis.

If you had acute onset painful vision loss in one eye (pain worse with eye movement) and your eye exam, MRI orbits and other exam findings were all consistent with optic neuritis, then that is probably still the diagnosis.

The thinning in the unaffected eye could be due to subclinical optic neuropathy which may occur in the setting of multiple sclerosis or other demyelinating diseases of the central nervous system associated with optic neuritis (MS is the most common cause however).
 
I don’t know what the normal values are for the lab where you had the VEPs performed (those values could be normal in both eyes but different labs have different values for normal ranges (so maybe they are both slightly prolonged in both eyes?).
 
The pattern of the thinning on the OCT might be helpful in distinguishing optic nerve hypoplasia versus optic neuritis too. But again, I would make the diagnosis of optic neuritis based more on the history of your vision loss, the eye findings at the time of the sudden vision loss and the MRI findings at that time too. 
 
It is hard to give an answer without seeing the detailed OCT data however and I think your case is complicated enough that I cannot adequately answer  your question just based on the information offered so far.
 
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

MRIs...with or without contrast?

1/20/2018

 
Here is My Question:
I have been wondering about the value of an MRI with and without contrast. With the FDA saying gadolinium is safe, but accumulates in the brain, what would be the times in which you might *skip* the gadolinium part of the MRI? If you have had a year with no relapses and nothing showed on the previous MRI and if you don't have any new active symptoms would it be worth using the contrast still? If there was some inflammation but weren't likely to change the DMT would you still recommend contrast? Would having an MRI every other year with contrast be a reasonable approach?

Answer:

Different practitioners approach this differently and there can be specific reasons certain individuals should get MRIs WITH contrast every year. That said, if there are no new symptoms, one option is to get a MRI each year without contrast and then return for another MRI with new contrast if new lesions are seen on the non-contrast MRI.
 
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

Why Am I Always Sweating?

1/20/2018

 
Here is My Question:
I have 2 questions.

1) I am always hot and sweat constantly. I can be sitting still in an air conditioned room and still have sweat drip down my face, soak my shirt and the hair hanging down the back of my neck is wet.I am especially likely to swat after a shower despite taking vey brief cool showers. I find this quite miserable since it also makes me feel more fatigued. I used to have allot of autonomic problems attributed to my MS, syncope, dizziness, orthostatic hypotension, tachycardia and urnary retention. All of these things actually resolved after a C5-6, C6-7 ACDF. But now I am chronically tachycardic again, restng HR in 90's and hot and sweaty. This has worsened over the past year. Is this MS or medication related or both? I have been on the same meds for many yeas except that venlafaxine increased from 112 mg/day to 225 mg/day. I recently completed a course of rTMS with excellent results. Meds are diltiazem, atenolol, Adderall, Allegra, singular, Advair, omeprazole, venlafaxine, trazadone and Tecfidera. Is there any treatment for this overheating and sweating?

2. How often do I really need to see my neurologist/MS specialist? I get nothing but a Tecfidera prescription and annoyance from these visits. My primary doctor who I have been with for a long time and like allot is more than happy to check a CBC/diff every 6 months. I have been on Tecfidera for 4 yeas after 6 years on Tysabri and 18 months on Avonex. My MRI has not changed since 2005 except for involution of old lesions into black holes. Other than intermittent nerve pattern n in my feet and fatigue that is overwhelming without Adderall, and dffculty with close focusing when I am tired I have few manifestations of MS. I find no benefit to me from 25 ft timed walk, 9 hole peg, various vision tests and stupid questions about why I get depressed and need TMS. I have a good therapist and see an excellent ophthalmologist once a year. How often do they really need to see my neurologist and why? I know how to find no him if I have a new problem.
Thanks.

Answer:
Good questions:
  1. Hyperhidrosis or excessive sweating is relatively uncommon. This can run in families, be related to autonomic dysfunction or related to involvement of certain parts of the spinal cord. It sounds to me like you may have paroxysmal orthostatic tachycardia syndrome (POTS). This is commonly associated with excessive sweating. This is one area where you will need to see a neurologist for help. Some academic centers like the Mayo clinic are very knowledgable about hyperhidrosis.
  2. I would say in your circumstance that you could probably visit your MS Specialist once a year or when problems develop. He or see may be able to help you with the sweating or you may need to see an autonomic 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

What Can I Do About Heart Palpitations?

1/20/2018

 
Here is My Question:
What can I do about the heart palpitations that I am experiencing with my meds.

Answer:

Talk to your MS Specialist about the heart palpitations. Without knowing the medications you take or the details of your medical history, it is impossible to answer your question.

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

Why is a low fat diet recommended for multiple sclerosis?

1/16/2018

 
Here is My Question:
Dr. Terry Wahls recommends 9 cups of fruit and vegetables a day. I am curious about this recommendation and too many vegetable could cause bloating.

Most people think of fruits and vegetables as teeming with the vitamins, minerals, and powerful antioxidants we need to live and thrive. It is true that many plant foods are rich in many of these substances, but just because a food contains a particular nutrient doesn’t mean we can access it. Unfortunately, plant nutrients often suffer from low “bioavailability”—which means that they are hard for us to extract, absorb, and utilize.

I would also like to know why a low fat diet is recomended for MS.

Answer:
Nine cups of vegetables is, indeed, quite a lot of fiber, so you may experience some bloating. I'd also recommend spreading out that large vegetable intake so that you aren't taking in more than 2-3 cups at a time. You may also try Gas X or Tums.

It is also a lot to chew.  To help with this, you may choose to blend the vegetables into a drink or smoothie and drink it through the day.

While there is no specific diet recommended for MS, many people do choose to follow a low fat diet, or at least choose to control the fat in their diet. Because achieving and maintaining a healthy weight is so beneficial to someone with MS, reducing the fat in their diet is a good way to help them achieve a healthy weight if they need to lose weight. Saturated fat is also pro-oxidant, which is exactly opposite of an anti-oxidant. So, reducing overall saturate fat intake may provide benefits in reducing inflammation.

Tad Campbell, MCN, RD, LD. Registered Dietitian
​
University of Texas Southwestern Medical Center MS Clinic

Does stress cause lesions if you have multiple sclerosis?

1/10/2018

 
Here is My Question:
Despite being on rituxumab, could a stressful life event (or series of events) cause progression or lesions? I can understand activation or exacerbation of existing lesions, but can MS persist in cases of extreme stress despite DMDs?

Answer:
The short answer is, MS activity can always occur despite disease modifying therapies. There are responders and non-responders to every therapy. Why breakthrough disease occurs is unknown. We think significant stress can upregulate immune system pathways, but the data linking to this to MS relapses is limited. Some of the studies done have shown that major life stressors did increase risk of a relapse, but correlations with chronic daily stress is lacking.

Benjamin M. Greenberg, MD, MHS, FAAN, FANA, CRND 
Vice Chair Translational Research and Ambulatory Affairs
Department of Neurology and Neurotherapeutics
Director, Transverse Myelitis and Neuromyelitis Optica Program
Co-Director, Pediatric CONQUER Program
Department of Pediatrics
UT Southwestern

How can one neurologist say I have MS and the other says I don't?

1/4/2018

 
Here is My Question:
How can two different neurologists look at my MRI report and symptom list and one says I dont have MS the other says I do? I'm female and 61 years old.

Answer:
Multiple Sclerosis is a clinical diagnosis; this means that there is no definitive diagnostic test and rarely is there a piece of tissue that can be biopsied and analyzed under a microscope. Whenever a diagnosis in medicine or psychiatry is based on clinical criteria, there will always be disagreements among practitioners. We try to minimize these disagreements by developing diagnostic criteria but these criteria often fail to address certain situations or practitioners ignore the diagnostic criteria altogether. This is why the diagnostic error rate for MS is so high (25 % among general neurologists and much higher error rates among non neurologists). 

For starters there is no symptom list that suggests a diagnosis of MS. All of the common symptoms experienced by people with MS can occur with other medical and psychiatric diagnoses. Furthermore, there is no MRI appearance that is diagnostic of MS without a history and examination that is consistent with MS at some point in time. 

We diagnose disorders not through a list of symptoms but through the expert elicitation of a medical history; taking a medical history is akin to a journalist investigating a story involving a particular area of their expertise, perhaps finance or Israeli American diplomacy. The journalist must gather information from various sources, clarify certain responses (for instance the  when, where, why and how of the story elements), and ask specific questions based on their intimate knowledge of the subject. Once this is done a story emerges that may suggest a number of possibilities, and the journalist must obtain further information that confirms only one likely possibility. If the journalist can not find confirmation, then there is no story to publish. Similarly if the doctor can not find confirmation there is no diagnosis. 

You would likely benefit from an expert consultation with an 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

Should I continue taking Tecfidera?

1/4/2018

 
Here is My Question:
I've been on Tecfidera for 3 years after having Tysabri infusions for 2 years. My JVC factor was 1.8 last year and my JVC factor has increased to 3.8. Should I be concerned? Do you feel that continuing Tecfidera is a good option for me?

Answer:
As I have stated many times on this site, there is no evidence that JC virus antibody index values are at all associated with the risk of developing PML while on Tecfidera or any drug OTHER than Tysabri.

Now if your absolute lymphocyte count is low (perhaps less than 600) that my be a good reason to consider stopping Tecfidera, since a low lymphocyte count is associated with the risk of certain viral infections including PML.

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

Can I get electrolysis while taking Lemtrada?

1/4/2018

 
Here is My Question:
I had my first Lemtrada dose in June 2017. I want to know if I can use electrolysis as hair removal mechanism while using Lemtrada and if there is any special consideration I should take into account if I go through both, specially when I get my second dose. Thanks for your support and happy new year. 

Answer:
There are many potential skin complications from electrolysis; the trauma of the procedure can certain lead to skin infections in immunosuppressed people. I would make sure the procedure is done by a licensed professional under the supervision of a doctor . I  would not do electrolysis, if you’ve experienced problems with recurrent bacterial or fungal skin infections or if your blood counts are abnormal before the procedure (especially the white blood counts). It is probably best to avoid the procedure for 2 to 3 months after Lemtrada treatments, even if these other conditions are met.

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

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