Here is My Question:
I am 69 years old and have been battling MS symptoms since the age of 27 starting with optic neuritis in one eye and the next 3 years later. Each decade I've had more problems. I'm unstable, and I fall a lot. Now I have seizures and am on medication for that as well as for tingling muscle spasms that happen all the time. I did not have an MRI until I was in my middle 50s and have had 5 more since. I have had a spinal which was clear. Every neurologist I have seen says the white matter and lesions are not in the right place for it to be multiple sclerosis. I am now down to a walker and wheel chair when needed. It is very difficult to walk at times, and the fatigue is awful. I try to stay active, but it is getting more difficult as each month passes. Please see if you can help with info I am missing or a different type of doctor. Thank you very much. Brenda in Houston, TX. 

Answer:
In Houston I would recommend George Hutton MD at Baylor (CLICK HERE)
In Dallas, my colleague, Darin Okuda MD (CLICK HERE) might be able to help.
 
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:
Can these test proven MS? Four OCBs with no serum bands, low igg syn rate and index, mild elevation of myelin basic protein and low total protein. CSF ans serum high elevations of igg.  My MRI's 2 years ago show small low density lesion on basal ganglia(possibly existing ischemia, per radiologist). Recent MRI - tiny focus subtle diffusion restriction in the left parasagittal ventral pon belly, possibly reflecting a subacute basilar perforator small vessel infarct. also scattered foci of t2 prolongation involving periventricular and subcortical white matter of the bilateral cerebral hemispheres in the setting of borderline volume loss.with some minor motor with dominate severe sensory and autonomic dysfunction.

Answer:
The diagnosis of MS is mostly based on clinical history.  The use of MRI findings and OCBs in the spinal fluid can be of assistance but the final clinical diagnosis depends mostly on the history and neurologic exam.  That being said, + OCBs require 5 OCBs in the CSF that are not present in the serum. 

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:
Neuropathic pain or parasthesias are more commonly noted by patients at bedtime when your legs lie in repose. 

​Answer: 
I recommend you discuss with your neurologist to make sure you have no other cause for these symptoms (such as peripheral neuropathy or restless leg syndrome). You can read more questions and answers about tingling HERE.

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:
Is MS on the rise and if so, why? I live in a small community and am surprised by the number of people I know who have MS. According to the statistics out there, I seem to be experiencing a statistical anomaly. My question is are we missing a cause right under our nose, so to speak?

Answer:
The diagnosis of MS is on the rise, possibly due to earlier diagnosis with advance MRI technology and revised diagnostic criteria (the newest MS diagnostic criteria allow us to diagnose MS sooner than was possible previously).  There may be other environmental factors contributing to the rise in diagnosis of MS but what these factors are is not entirely clear.

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:​
My cousin has RRMS and takes Copaxone and has been for about a year now. She gets really bad serum sickness every time she takes it. She said she can hardly get out of bed for about three days. Should she be on a different medication?

Answer:
It is quite rare to get serum sickness after injecting Copaxone.  However if she is that sick after the injections she should discuss with her neurologist other treatment options as there are many other FDA approved treatments for RRMS.

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'm newly diagnosed (last September) 2 months post delivery of my third child and I just had my first Rituxan infusion yesterday. I chose this medication because I want to nurse. I'm reading conflicting theories about its ability to cross into breast milk. My doctor told it it's too large to pass but other websites I've been reading say that it does pass. Can you clarify if it is safe to nurse on this medication and if so how long do I need to wait after infusion (pump and dump for how many days)?

Answer:
There is no data specific to Rituximab and breastfeeding. It has been found in breast milk in some animal studies but because rituximab is a large protein molecule, the amount in milk is likely to be very low. When we look at other monoclonal antibodies that have limited data, there has not been ill effects for infants who are breastfeeding. Some experts say that if this drug is required by the mother, it is not a reason to discontinue breastfeeding. The half life of rituximab in a mother would be about 6 weeks, with the highest concentrations in the first 2 weeks. In general we think nursing is safe, but there is limited data and we tend to defer to a person's treating physician.


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

Here is My Question:
Why do I tend to notice my symptoms and fatigue about a week before my next Tysabri infusion? 

Answer:
Some patients do report a return of symptoms a week before their next Tysabri infusion. There are many possible causes:

1. The infusions have a mood elevating effect that wears off. This seems unlikely but is in line with # 4 reason.
2. You eliminate Tysabri from your body much faster than usual.  This is particular true in people who have antibodies directed against Tysabri
3. You are overweight and do not achieve high levels of Tysabri after each infusion. This is particularly true in people with weights over 150kg (over 300 lbs)
4. This is psychosomatic and serves as a notice for you to get your next infusion.

You can have your doctor check to see if you are making antibodies that bind to Tysabri and eliminate it from your body shortly after it is infused. Normally, most but not all people who develop these antibodies experience infusion reactions some time between the 2nd and 6th infusion, and normally but not all patients with these antibodies receive no benefit from Tysabri infusions and continue to experience relapses and MRI activity.

In the near future we should be able to measure Tysabri concentrations in the blood to make sure we are giving enough Tysabri to each patient at the correct dosing interval. Stay tuned for that development.

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

Here is My Question:
If Tysabri is working... does it stop inflammation? If I were to go off Tysabri would the inflammation process start up again? I have been on Tysabri for 8 years without any active lesions or signs of inflammation. Some doctors say that if there is no inflammation then the MS has transitioned to progressive - no inflammation. Isnt and that what Tysabri is suppose to do is to stop progression; hence inflammation? Thank you in advance for answering my questions. 

Answer:
Tysabri works by making more difficult for migration of the immune system from the periphery into the brain and spinal cord.  This is likely why it works so well in reducing new relapses of multiple sclerosis, new lesion formation on the MRI, and mitigates disease progression.  I would be careful not to say that is "stops" progression.  In fact, the ASCEND study (Tysabri in secondary progressive multiple sclerosis) did not show it is better than placebo during this phase of the disease. The progressive phase of multiple sclerosis, in part, is independent of inflammation.  This is an area of research where we need to learn more and develop other therapies targeted to the degenerative phase.

I would also add that since tysabri works so well, I wouldn't read too much into your experience of disease stability and coming to the conclusion that you must be in a progressive phase.  Progression is measured clinically with objective metrics such as walking speed, cognitive testing, hand dexterity tests, strength, etc.

To answer your first question, the RESTORE study noted that there is roughly a 50% chance of having recurrence of disease activity after stopping tysabri.  I have seen cases of this that can be quite disabling.  When ever I contemplate taking a patient off tysabri, I get them on a bridging medication to lessen the chances of rebound inflammation.  There is evidence that rituximab and gilenya can  help in this regard.  I have found good results with rituxan and tecfidera in getting patients off tysabri safely.
​
​A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Please read Liz's new blog and share with others! 
http://www.healthcarejourney.com/patient-blog/ms-benefits-of-engaging-a-physiatrist

Here is My Question:
I've been taking Tecfidera for 2 1/2 years. Recently, I did a series of MRI's to compare with the baseline MRI's I did before starting the drug. I have one new lesion. Does this mean that Tecfidera does not work for me? Or would I have more new lesions if I did not take the drug? My neurologist does not know the answer to this question.

Answer:
Generally speaking, 1 new lesion over 2.5 years is considered acceptable.  Keep in mind that Tecfidera, as with all of the therapies, are partially effective, and we expect some disease activity.

​More than MRI response is used to determine the success of Tecfidera.  I would suggest that if you are doing well functionally, and you have reasonable lab work (i.e., white blood cell levels), that it is likely advisable to continue on the medication.

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

Here is My Question:
I have been on Tysabri for 18 months and my numbers for the test for PML is 3.6 I am going on a different medication. Can my numbers lower after time passes?

Answer:
Yes, antibody index levels can change while on and off Tysabri. The index is not the sole factor to consider for PML risk, of course.  The main thing to keep in mind is the choice of therapy that you transition to and when it is started is important in order to lower the risk of rebound MS disease activity coming off Tysabri.  Your neurologist can help with that.

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

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Here is the answer to your question:
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Question:
The school where I work has an outbreak of the Norovirus. I work part time so avoided the worst so far but after speaking to my doctor they suggested I might stay away from the school for a week until it's clear. As catching could bring on a MS episode. I don't like letting my work mates down but don't want to be ill.

Answer:
Others have had similar questions.  By typing 'norovirus' you can see all that has been asked about it.

Here is the link to make the search even easier...
http://www.healthcarejourney.com/apps/search?q=norovirus

Here is a previous Q&A about inactive MS...READ Q&A

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http://www.healthcarejourney.com/spasticityspasmscramps.html

Question:
In cases of "possible MS" if the OCT changes from one scan to another, can this indicate demyelination? How many points difference are significant? It looks as if the normal range is anywhere between 70 and 99? If the average thickness of the RNFL falls below 70 into the sixties is this significant? Thank you so much for your help.

Answer:
OCT changes in MS do not always reflect demyelination.  OCT measures the thickness of the retina which has no myelin.  The nerves from the retina go on to make up the optic nerve.  So any loss of the thickness on OCT may correlate with loss of axons (nerve fibers) in the optic nerve.  The loss of axons may be the result of demyelination or could be secondary to other causes.

The normal OCT range and amount of change that is considered significant may vary depending on the brand of machine being used.

I cannot comment on any individual OCT results and their significance without having examined a patient.  One thing to keep in mind is that OCT is just one tool a physician can use in assessing a patient but that the clinical significance of any test result may depend on many other factors.

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:

My MS has been stable since my diagnosis in 2012. I do have lots of symptoms that makes life difficult. I am considering HSCT but I am not convinced. The forum where I am on, which is in Singapore, said one young lady passed away after her treatment. This was while she was back home due to complications. I know there is a 1% risk of death but as it just happened I feel the percentage could be higher. What are your thoughts on this? Wait till disability sets in, or get stem cell treatment before its too late??

Answer:

Hematopoietic stem cell transplantation (HSCT) has been used in the treatment of very active MS patients for over 20 years. The current mortality rate for this procedure is 1 to 2 %. To put this mortality risk in perspective, the mortality rate associated with HSCT is probably 2.5 to 5 times the rate of dying from complications related to Tysabri in the most high risk patients (i.e. those with a history of prior immunosuppression, a JCV antibody index > 1.5 and a duration of therapy over 2 years).  HSCT is considered experimental by the FDA (only relevant if you live in the USA) because of these potential risks, the lack of comparative efficacy and safety data (i.e. HSCT versus a highly active treatment like Alemtuzumab) and the lack of guidelines on selecting appropriate patients for treatment. 

Without knowing anything about your illness it is very hard to provide you with individual advice except to say that HSCT is probably only indicated for those MS patients with a degree of risk factors and disease activity that places them in the worst 10 to 20% of patients. Please discuss this with those handling your medical treatment before making any decisions as our answers are for to be used for information purposes only.

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