Here is My Question:
My son had a Baclofen pump implanted 2 yrs ago...two yrs of having medication increased with no relief. The pump was tested and the catheter is broken or damaged. Should it have been detected that there was a problem before now? We were told this is rare. Is it?


Answer:
These situations can be very difficult. Baclofen pumps can break and determining that can, at times, be difficult. That said, without knowing the exact details of a case it would be impossible for us to comment on whether it 'should' have been detected.

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:
How many OCTs are necessary and over what stretch of time to rule demyelination in or out? I had an OCT 18 months ago which showed damage. I had another recently and when I asked about it my eye doctor just said really we can only get a picture of this over time and said he could not compare the new one to the one from 18 months ago because it did not make sense to do so. However my neurologist is interested in a repeat OCT. I am confused.

Here is my answer:
 
The question of when and how often to perform OCT depends on why the test is being ordered.
 
If you have a clear cut definite diagnosis of multiple sclerosis, there is not great evidence that you need to have annual repeat OCT scans.  However your neurologist may want to track the retinal nerve fiber thickness as a way of monitoring your MS.
 
I usually get repeat OCT scans in my patients who have either atypical cases of optic neuritis, a questionable diagnosis of multiple sclerosis or unexplained vision loss.
 
Some patients on an MS medication called Gilenya (fingolimod) have annual OCT scans of the macula to help monitor for a rare side effect (macular edema).
 
Sincerely,
 
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:
Hi, I have been taking Tecfidera for 11 months now and have noticed my hair has become really thin! It has become more noticible recently and hair fall has been happening throughout! I have been taking hair vitamins since I started taking Tecfidera as I read that people had experienced this as a side effect so I thought that this might help to combat this! My hair used to be thick and shiny but now has no life to it and gets tangled all the time! When I asked my ms nurse she said that this is not the cause of Tecfidera and I should be grateful. I am grateful but at 33 I do not want to loose all my hair!

Answer:
Hair thinning is very common in the general population and probably more so in MS patients. The cause is usually not medication with the exception of certain steroids, chemotherapies and Aubagio. Please refer to prior posts on this site about the causes of hair thinning to see if any of these causes apply to you. If this remains a concern after looking into these other possible causes, rest assured that hair thinning as a result of medications usually reverses with continued use the medication after 6-12 months. If this is not the case, you may need to consider an alternative disease modifying therapy.

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:
Although I have been seen and had multiple tests I am not confident of the diagnosis. It all started a year and half ago. My general doctor thought I had MS and sent me in for testing. My symptoms are pins and needles and sometimes hot burning sensations in my hands and feet. Restless leg sometimes and whole body fatigue and sometimes fatigue just in my legs. I have dry eyes and pain in one eye. Sometimes in my eyes I have pain and it is foggy and I always have a constant dull pain. However it gets better when I wear my glasses. I have facial issues where it feels like someone is placing a feather on my face as well. I have lower back pain that is sharp but then goes away shortly after. And now my lower biceps have sharp pain and I am honestly not as strong as I used to be. Up to 50% difference. Lastly my neck is very tight and does not move as very well. Feels as stiff as my biceps now. I have been clumsy and off balance at times. Difficulties sleeping and when I wake up I am always exhausted. So I have had MRI of my brain and neck. The exam showed no legions. Back X-rays and mutiple blood tests including gluten sensitivity, vitamin b issues, Lyme's disease, 2d cardio gram in case I had a stroke, nerve conduction test, and a skin biopsy. The only test that came back positive was skin biopsy test. So the doctor diagnosed me with idiopathic small fiber neuropathy and no known cause. However he cannot explain eye pain and lower bicep pain and stiffness in my neck and lower biceps. Looking for any thoughts... Thanks! 

Answer:
You’ve described a collection of fleeting, vague neurological symptoms. This rarely helps us establish a specific diagnosis in neurology. What is missing is a neurological history which can only be elicited by a competent neurologist. He or she should also perform a thorough examination to help determine the source of your problems. No amount of testing can substitute for a thoughtful evaluation by a skilled clinician

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:
I have been on Plegridy for 5 months and I only injected in my thighs, I then put on 9 pounds around my thighs during that time. Has anyone lost weight after coming off Plegridy? 


Answer:
There is no convincing evidence that interferons result in weight gain or weight loss. This includes Plegridy which is pegylated interferon

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:
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:
Can a person still have MS if their CSF was negative for oligoclonal bands but the MRI shows lesions in the brain?

Answer:
A person may have MS without oligoclonal bands or other evidence of intrathecal immune activation in their CSF but this is less common and always raises the possibility of alternative diagnoses. Using older techniques approximately 70-80 % of definite MS patients will have oligoclonal banding in the CSF by agarose gel electrophoresis. The newer technique, called isoelectric focusing (IEF), available and in use for more than 20 years has a sensitivity of 90-95 %.

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:
I am so desperate to get help and advise. My story starts April 2014 when all of a sudden I felt my legs go numb and then my muscles were contracting in my legs. This all resolved after a month. My MRI of brain and spine were all negative. Blood work was normal other then low b12 which resolved. Lymes disease was negative. I saw an MS specialist and she felt MS was a home run diagnosis. Right after this my muscles in my thighs felt so tight and still after 2 years they feel the same. Especially if I bend and use them. In 2015 I felt not too bad just stiff muscles and trouble walking up stairs. I felt numbness in my face and my GP did an MRI of my brain and it was normal. Then in 2016 my right leg started to give out at times. And slowly currently my right leg feels weak and if I walk a lot I limp on my right side. Now my right arm feels weak also. My hand is strong just my deltoid muscle has a lot strength in it. I feel my spine recently hurts so much to lie on my back and I cough when I sit too long as it hurts on my right side so I lie on my left. Strange? So my GP is so confused as I have had MRI done so we just did full spine and normal? I am 48 years old, I really think I have been tested for everything and had brain and spine done and normal. Do you think this is MS maybe PPMS ? I am so depressed because I am lost on where to go and this feels like it's becoming physical this year. I have exhausted my GP where to go and who to see?

Answer:
You should seek another opinion with a neurologist, preferably a fellowship trained multiple sclerosis specialist.  Normal MRI scans repeatedly over time would be highly unusual for multiple sclerosis.  In progressive (i.e., primary progressive) forms of multiple sclerosis, there may be a paucity of disease seen on MRI (although part of the criteria requires lesions to be identified), and a spinal tap (to look for oligoclonal bands) may be required.  I would start with another consultation opinion with an MS specialist, and if that individual does not believe you have MS, inquire what subspecialty of medicine would be best for you to see (i.e., a rheumatologist, etc).

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

Question:
I've been dealing with MS since 2013 but I also have fibromyalgia. As of today I'm taking Cymbalta and Tecfidera. My question is that I'm trying to loose weight but it is impossible.

Answer:
Nothing is impossible. You simply need to reconsider the barriers and the options. You also need to figure out if losing weight should be your top priority at present.

If it is so important, what is getting in the way of this goal? Do you have advice on diet? Do you have an exercise coach? Do you have a place to work out? Do you have transportation? Are you adjusting your daily schedule to accommodate a minimum 30 minutes of exercise (preferably 45 to 60 minutes)? Are you able to cut down to 1200 calories a day and increase your activity level? Do you need a group to help keep you on track? Have you contacted Daryl Kucera about joining his online exercise group that you can do from your living room? READ MORE
​
There are solutions to all of these questions. Break the problem down into smaller pieces and then work on solutions to those smaller bits. Get help wherever you need it from your doctors and other groups. Even a local YMCA can be of help. Everything is less daunting if you take an analytical approach to the problem.

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

Question:
How long does it take for Copaxone to reach full effectiveness? I was diagnosed with MS in June 2015 and have been on it for a year. My first MRI after 6 months of use showed a decrease in size of my existing lesions, but also showed a new lesion. My second MRI 4 months later showed no change in existing lesions but also showed some new lesions. My doctor does not want to continue prescribing Copaxone and wants me to switch to another drug. I have not had any relapses since experiencing the initial symptoms that led to my diagnosis. Should I give up on Copaxone?

Answer:
Copaxone should have "taken effect” within 6 months of starting treatment. Your continued MRI activity at 10 months (4 months after the 6 month MRI) confirms that copaxone is either not working or only partially effective. If you were to continue Copaxone, it is more likely than not that you would fail treatment within the next 3-5 years. 

We use MRI scans for their predictive validity not their concurrent validity. If MRIs only confirmed your current clinical state (in your case without relapses and feeling fine), they would have little utility in decision making. If this were the case we would just ask you how you are doing. We are far more interested in predicting the future if all else (including your current treatment) remains the same going forward.

I hope this helps. Time to consider another disease modifying treatment.

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

Question:
For patients "in limbo" is there a way to identify if stiffness - especifically leg / hamstring stiffness is MS type spasticity? Thanks.

Answer:
Spasticity is seen in hundreds if not thousands of disorders. MS is not even close to the top of the list of most common causes of spasticity and there is nothing specific about the spasticity seen in MS patients.

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

Question:
Hello thanks for a great site with great subject matter and experts on MS. Do you guys recommend an activity tracker to keep track of some vitals and activity?

Answer:
There are scores of activity trackers on the market these days, so I attached a recent review from PC magazine. I am a fan of the Fitbit.

For MS or any chronic neurological disease you want something that tracks activity, calories, heart rate and sleep; This will give you a clear idea of how you are doing over time.
​
Here is the link to the PC magazine review:

http://www.pcmag.com/article2/0,2817,2404445,00.asp

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:
I have had RRMS for 19 years. Now age 58 I only had treatment by choice with Copaxone for less than a year and developed pericardial effusions. Now my neurologist is considering Aubagio. My labs just came back. JCV AB is 1.16. I know PML does not usually occur on Aubagio but can PML occur by just having MS?

Answer:
PML is an opportunistic infection meaning that the immune system has to be weakened to allow the opportunity for this rare infection of the nervous system.  MS alone does not weaken the immune system, but some of our MS therapies can do so and have been linked to PML (i.e., Tysabri, Tecfidera, and Gilenya).

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

Here is My Question:
I was recently diagnosed with MS on June 1st 2016. I had a severe first attack that affected my four limbs. I was referred to a physical therapist, but she did not really help me out all that much. I want to move forward and I would love to find a physical therapist that specializes in MS that can work with me. I don't even know if I can find one where I live since I live in a small town, Bakersfield, California. Can you help me find a physical therapist that specializes in MS near where I live?
Thank you

Answer:
I am not too familiar with providers in that area of California.  However, here is a great blog with information from a physical therapist who specializes in MS... READ BLOG.

​Also, the National MS Society identifies providers that have demonstrate competence in MS care that they call "Partners in MS Care".  You can go to the following link to search for providers (including rehabilitation experts) in your area:

http://www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider

Alternative, you can contact the Southern California & Nevada Chapter of the National MS Society: Toll Free: 1-800-344-4867
Phone: 310-479-4456
A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Question:
If I have anterior ischemic optic neuropathy does that mean I have multiple sclerosis?

Answer:
Anterior ischemic optic neuropathy is not associated with multiple sclerosis.

There are two forms of anterior ischemic optic neuropathy, non-arteritic and arteritic.
The arteritic form is usually seen in people above the age of 50 years old and is associated with giant cell arteritis (also known as temporal arteritis).
​
The non-arteritic form is usually seen in people above the age of 40 years old and may be associated with obstructive sleep apnea, hypertension (high blood pressure) or diabetes mellitus.

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 had a aneurysm about a year ago. I was in the hospital for 2 months and was never given anything for my MS. I had been on Copaxone. Then when I was up to it, was put on Aubagio, which just gave me very high blood pressure, which I am still be treated for. I have been off of Aubagio for about 3 months. They now want me to go on a new drug.

First, I'm concerned because obviously that Aubagio is not out of my system yet. Would it be safe going on something else when that is still in my system causing high blood pressure (taking med for that). Other question: how the heck am I suppose to know what to choose? They gave me booklets on Tecfidera, Tysabri, Lemtrada. I saw the neurologist's assistant. Cannot get an appt to see my neurologist. I am looking for a new one.

I was on Rebif (affected liver), Gilenya (white cells), and Copaxone. How do I decide which one they gave me is right for me? I'm scared of all the side effects but would really appreciate a "professional" point of view. We are going on vacation in just about 3 weeks so I'm afraid to start something new before I go on that. Anyway, can you give me a suggestion on how I should decide what to take. She just handed me the info and said let us know which one you want to try. Can't handle this alone. Would so appreciate your advice. Thank you!

Answer:
You ask very good questions. As I don’t know anything about your individual case, let’s just think through your problem together, so you know what questions in order to make an informed decision.

First of all, Aubagio rarely raises blood pressure more than 5 points. I suspect your blood pressure was high before starting the Aubagio, if your blood pressure became, “very high” after taking this medication. If you and your doctors really think this is the cause of your high blood pressure, the aubagio can be completely eliminated from your system in less than 2 weeks by taking cholestyramine for 10 days. 

The more difficult question is, how do you decide which one disease modifying therapy is right for you going forward? To make this question easier, let’s assume copaxone, interferons, gilenya and aubagio are no longer options based on your past experience. This leaves you the three choices mentioned in your question and a new drug called Zinbryta (Daclizumab). Here are the pros and cons

If your MS has been active, defined as new MRI activity (new T2 or gad lesions) in the past year with one or more relapses, all drugs could be considered. The greater the activity (number of new lesions on MRI, number of relapses) the more I would consider the most highly active agents such as Lemtrada or Tysabri

If your MS has been active (defined as above) and your walking is limited (especially if you’ve had symptoms of MS for more more than 10 years) and getting worse because of balance or leg weakness problems, I would consider lemtrada

If you’ve had minimal activity of your MS in the past year I would consider Tecfidera

If you have long-standing MS (greater than 15 years), no definite relapses in several years, and a slowly worsening course with repeat MRI scans over the past 3 years showing no significant activity none of the available therapies are likely to be of benefit to you

As for side effects and convenience

1. Tysabri is probably not a good idea if your JC virus antibody index is greater than 1.0 since this would elevate your risk of developing Progressive multifocal leukoencephalopathy (PML) ; This is a monthly infusion with very few side effects
2. Lemtrada is associated with a > 30 % risk of developing Autoimmune disease particularly autoimmune thyroid disease. Because of this you must be monitoring (regular exams and monthly blood and urine tests) for 5 years after your last dose. This is given as a 5 days infusions followed one year laterby a 3 days infusions. Many people experience manageable infusion reactions
3. Daclizumab is a monthly subcutaneous injection that you can give yourself. This can cause autoimmune liver disease, rashes and enlarged lymph nodes. This also requires regular monitoring
4. Tecfidera is a pill taken twice a day with food. It can cause flushing, nausea, abdominal pain, cramping and diarrhea that usually disappears after the first few weeks. In the long term it can lower your lymphocyte count which must be monitored on treatment. This is the most prescribed MS medication in the world and the best choice for you if you have average to below average disease activity and severity.

There is also a very good treatment for MS that we anticipate getting approved by the FDA by the end of the year. This is called Ocrelizumab and is given by intravenous infusions every 6 months with few side effects

So hang in there and think about your choices while you vacation. The most important question to ask your MS specialist is ; “Where am I in the course of this disease?; How active is my MS by clinical and MRI criteria?; and what is the chance of developing significant disability within 2 to 3 years without aggressive treatment? If he or she can not answer these questions, you need another opinion

Good luck

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:
​I just had an MRI done two weeks ago. It was open MRI without contrast. When my GP got the result he told me he doesn't think that it's big deal. He was not agreeing with the radiologist. But I insisted to see a neurologist so I saw one last week. He checked on my reflexes then made me walk back and forth and told me no he also doesn't think that I have MS because the images and symptoms should match. He also told me that he'll take a look at my MRI and call me. After a day he called me to tell me to do another MRI with contrast this time. But still he told me people with headaches can have white spots. Here is my MRI result. Findings: Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In patients of this age, these are atypical, and could be inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion. Impression: Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised. The thing is that I had headaches but I don't remember I had migraines. So how and why I got third spots I don't understand and how they can be normal. If they are nonspecific then why did he ask for a second MRI? I am 37 years old and based on my age both my doctor and the neurologist dismissed other possibilities that the radiologist suggested. My doctor ran many tests for inflammation and ANA test. ESR, C-receptive and many others and they all came back negative.

Answer:
Non specific T2 hyperintensities (white spots) of the type described in your MRI report are very common and usually of no consequence. They are often a marker of migraine, the most common neurological problem in the western hemisphere (estimated 25-30 million migraine patients in the US). They can occur before or after the onset of migraine and in people with very infrequent migraine symptoms. By the way migraine symptoms can include things other than headache.

MS is a clinical diagnosis associated with neurological symptoms and findings. MRI helps support the diagnosis of MS but is not a diagnostic of MS by any means in an individual without typical symptoms and findings.

Revere Kinkel MD
Director of the MS Program
University of California San Diego

Question:
I'm 55 now, and was diagnosed with Type 1 diabetes at age 52 and then with RRMS at age 54. Despite the health issues I am generally in good health but am having trouble with my MS medication. I started with Tecfidera and my blood sugars went through the roof. Then I changed to Plegridy and blood sugars were fine by had intense fatique and flue like symptoms and after 6 months asked to change medication. I'm now on Copaxone which seemed fine at first but now blood sugars are on the rise. Is there another medication option that would keep my blood sugars in line and minimize relapses (I had two incidents in 2012/13 with numb face/nerve damage and double vision)

Answer:
Type 1 diabetes is considered an autoimmune condition that progressively or intermittently destroys insulin producing islet cells in the pancreas. It has recently been suggested that symptomatic diabetes can occur with less than 50% destruction of insulin producing cells. This may be particularly true in late onset Type 1 diabetes. This means that certain immune based therapies could either improve or worsen Type 1 diabetes by decreasing or accelerating destruction of insulin producing cells, respectively. We could hypothesize that fumarate (Tecfidera) based therapies somehow worsened your glucose control by accelerating injury to the pancreatic insulin producing cells or creating auto-antibodies against insulin. Theoretically, the same could be true of Copaxone. Interestingly we would have expected interferon therapy to cause similar problems if this were the case.

To be on the safe side, it may behoove you to use MS disease modifying therapies typically used to treat humoral immunity of B cell function. These therapies would include rituximab, mycophenolate or azathiprine; Of these therapies, rituximab and the soon to be approved Ocrelizumab are the most effective. I would definitely avoid the use of alemtuzumab (Lemtrada) because of the high risk of precipitating autoimmune conditions with this treatment.

Revere Kinkel MD
University of California San Diego