Multiple Sclerosis Center

How long is it before a "possible MS" diagnosis becomes void?

3/31/2018

Here is My Question:
How long before a "possible MS" diagnosis becomes void?

Answer:
Until the diagnosis is confirmed by the McDonald criteria or a better explanation other than MS is found.

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

1 Comment

Should I get a shingles vaccine before starting Tecfidera?

3/31/2018

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Here is My Question:
I have not been officially diagnosed with MS, but my neurologist says she's 99% certain and wants me to start on DMDs. Tecfidera seems to be the best option. I'm 47 and had shingles about 10 years ago. It was a relatively mild case, but painful enough for me to be wary of ever getting it again. I've read that immune suppressants increase the risk of getting shingles again, so I'm wondering whether I should get vaccinated before I start on Tecfidera. I've read about the live vaccine Zostavax and a new non-live one, Shingrix, that has just been approved here in Europe. It needs to be taken twice, six months apart. Both vaccines are described as being approved for people over 50 years of age. Should I get vaccinated before I start on the Tecfidera?

Answer:
There is no specific data on this. An episode of shingles boosts immunity to the virus and may help protect you from getting shingles again. Although it is uncommon, some people may get shingles more than once. The effectiveness of the zoster vaccine in preventing repeated episodes of shingles has not been demonstrated in clinical studies. That said, it is considered safe to get.

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

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How do I control this burning heat feeling?

3/27/2018

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Here is My Question:
Hi, I am a 27 year old female who has recently just been diagnosed with Multiple Sclerosis. I went to the doctor as I suddenly became visually impaired after rubbing my left eye slightly. They admitted me and MRI scans found inflammation in various areas of my brain and the top and bottom of my spine. I suffer from small fibre neuropathy, a condition I got diagnosed with in 2015 after an injury to the nerve. I started to get pains and needles and burning in my feet and now I get it in my fingers.

My back is starting to feel some burning and I get heat flushes and chest pains and I feel like I need to urinate almost every time I drink anything. I also get sharp pains around the kidney area. There are some overlapping symptoms with MS and small fibre neuropathy but it's hard to tell if the chest problems and sweating and the visual impairment are solely due to MS? I am awaiting my CT scan results which I have had for my chest.

How do I control the burning and heat rushes? I try ice and cold packs but feel that may not always be good for my bones as I also have polyarthritis. The neurologist also suspects neurocardoisis as something which could have been the issue but then inflammation was found.

Can this condition still exist in someone that gets visually impaired temporarily and has inflammation in the brain and spine? Thank you.

Answer:
Your condition sounds very complicated as you have multiple diagnoses including MS and small fiber neuropathy.

While MS can affect your vision (through optic neuritis) it is very rare for a small fiber neuropathy to have a direct affect on the quality of your vision.

You will have to work closely with your neurologist and possibly a neuro-ophthalmologist to evaluate what is causing your vision problems.

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

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Do white spots and OCBs in my spinal fluid mean I have MS?

3/21/2018

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Here is My Question:
I had a bad headache a month ago. I visited a doctor and he asked me to get a brain MRI. They saw some white spots and also my OCB is positive. I want to know if I have MS or not? I DON'T have any other problem.

Answer:
Your report of abnormalities on MRI and OCBs in your spinal fluid are suspicious for MS; however that alone can’t make the diagnosis. Use of the McDonald criteria are explained elsewhere on this site. You should be reviewed in person by a physician that is well versed in proper application of the criteria to help answer your question.

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

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Should I go to a clinic for my pain?

3/21/2018

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Here is My Question:
I am experiencing very painful burning and throbbing on my face and jawline and especially right underneath my ears. Eating sets off nerve pain, smiling hurts. I have been relapse free since beginning Rituxan treatment 4 years ago. I did experience this symptom during my relapses prior to diagnosis.

This began roughly last Monday, 3/12, and has gotten worse since my Rituxan infusion on Thursday 3/15. I don't know if this is a pseudo-attack, perhaps worsened by the 3-4 nights of lack of sleep from Solu-medrol, or perhaps because I was months overdue for Rituxan due to insurance issues. Should I wait and see if it gets better? Should this be treated with steroids? Should I receive another higher dose of Rituxan? Do I need to drop into clinic?

Please advise.

Answer:
Send a message to your neurologist. This sounds like a recurrent symptom of trigeminal neuropathy/neuralgia. Repeat steroids or rituximab wouldn’t help this but a symptomatic treatment might help.

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

0 Comments

What do you think of ozone therapy for people with MS?

3/18/2018

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Here is My Question:
Have heard of (Medical) Ozone Therapy and if so what do you think about it for people with MS?

Answer:
There are numerous unapproved treatments based on the theory of increasing blood oxygenation. None have been proven in MS and there are some concerns about safety.

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

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Should I be taking pain medication?

3/13/2018

1 Comment

Here is My Question:
I have finally gotten off Amitriptyline, which took about 2 months. My dosage was 100mg and with advise from my neurologist I tapered off although a bit fast according to my neurologist. This medication made me feel awful and my pain was much worse then when I was off the medication. But now I don't know if I should take symptomatic pain treatment or just stay on nothing? My pain is okay and is intermittent at the moment.

I'm a bit scared being on nothing but at the same time I believe I'm doing okay besides my anxiety issues. I had anxiety on the medication too, although more at the end of my course. At the beginning when I started the medication it seemed to work but and after 4 years it worked against me. Any advice?

Thank you

Answer:
In general, if someone is not having ongoing neuropathic pain we do not leave them on a medication. We also recommend having detailed conversations with your providers on how to handle episodes of breakthrough pain – becomes symptoms can fluctuate. There are multiple medications and non-medicinal approaches that can be used to manage pain.

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

1 Comment

Is Biotin still used for multiple sclerosis?

3/13/2018

0 Comments

Here is My Question:
I saw on the news they say Biotin is bad in high doses, so do you still promote high dose biotin?

Answer:
Biotin is still under study for multiple sclerosis. While the initial study did not identify significant risks, the reason we do research is to identify risks. The jury is still out on Biotin.

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

0 Comments

Does Lemtrada have more risks than Ocrevus?

3/11/2018

0 Comments

Here is My Question:
In your opinion does Lemtrada have more risks than Ocrevus? We asked the new doctor about Lemtrada and she said she wouldn’t refuse to prescribe it but thinks it’s more risky than Ocrevus. They have no patients taking Lemtrada and stated there really isn’t a “market share” for Lemtrada. My husband didn’t like the use of sales terms! Thoughts?

Answer:
In my opinion, Lemtrada is riskier than the b-cell biological (rituxan and ocrevus). Secondary autoimmunity with Lemtrada is of concern and requires close monitoring throughout treatment but also years after stopping therapy. I suspect the market share comment reflects the reality that Lemtrada isn’t considered as a go to therapy unless patients fail other effective therapies due to its significant risks.

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

0 Comments

Does an MS neurologist need to know if his/her patient has had mono?

3/11/2018

0 Comments

Here is My Question:
Does an MS neurologist need to know if his/her patient has mononucleosis, after an initial infection of mono prior to MS diagnosis? Is re-infection with mono a risk for MS patients? I am aware there is an MS / EBV connection but what I am interested in is what happens when a patient who already has MS tests positive for mono.

Answer:
The presence or absence of EBV discovered by PCR or serological is not part of the diagnostic criteria for MS. The significance of EBV in MS is a matter of association and not causation currently. There have been many suspected infectious players in the pathogenesis of MS, with EBV among the most notable. This virus remains latent in B cells which also happen to be a significant factor in MS disease activity (the b-cell is involved in episodic bouts or inflammation or relapse) but may play a role in MS progression. At present, there isn’t clinical significance of EBV infection prior to or after MS diagnosis. This topic continues to be a subject of research.

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

0 Comments

What can I do to keep my legs from giving in and collapsing?

3/5/2018

1 Comment

Here is My Question:
I find that I collapse suddenly. My legs give in and I kind of fold down onto the floor. This doesn't happen all of the time and there doesn't seem to be any warning. What can I do to keep safe?

Answer:
I would definitely recommend using some type assistive device when you are walking (or standing), since you can’t predict when this will happen. A walker would be most appropriate, as a cane will not give you enough support in the event that your legs/trunk give out. It would also be important to seek out an explanation for why this is occurring, especially if this is a new symptom. Strengthening and stretching your legs, and strengthening your trunk would be beneficial too. Having the direction of a local physical therapist would provide you with the most benefit, if you have access to one. If you notice this happens more frequently when you are fatigued, try to plan your day accordingly, so you are less likely to put yourself in the position where this can occur!

Sarah Frank, PT, DPT, MSCS
Outpatient Rehab
Mt. Sinai Rehabilitation Hospital
490 Blue Hills Ave.
Hartford, CT 06112

1 Comment

Welcome to the
Virtual MS Center!

How long is it before a "possible MS" diagnosis becomes void?

Should I get a shingles vaccine before starting Tecfidera?

How do I control this burning heat feeling?

Do white spots and OCBs in my spinal fluid mean I have MS?

Should I go to a clinic for my pain?

What do you think of ozone therapy for people with MS?

Should I be taking pain medication?

Is Biotin still used for multiple sclerosis?

Does Lemtrada have more risks than Ocrevus?

Does an MS neurologist need to know if his/her patient has had mono?

What can I do to keep my legs from giving in and collapsing?

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Welcome to the
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