Here is My Question:
I read there can be "invisible" lesions. The article I read said this ""Can you reliably see a lesion for every symptom? Is there a symptom or can you find an abnormality on the physical exam for every lesion that is seen? The answer is an unqualified "NO". It said too many doctors try to draw conclusions about this. 

My doctor said (whom I really do like), made the comment to me that according to my MRI (I had 3 years ago) and how I have been doing, I should never have a problem walking. My problems have always been "cognitive" so quite frankly I hadn't worried about my walking, however, it did bother me that he said this, as I felt he didn't know "ME". We have talked since then and I think he gets my concern, so he is having me get another MRI since I haven't had one in so long. My question, I guess, is do you agree with this article? Could I have lesions that are "hiding" or just not seen? 

Answer:
A standard MRI scan provides important information about the structure of your brain. But even though MRIs are highly sensitive to changes that occur in the nervous system, an MRI scan, like any other test has certain limitations:

1. It is almost impossible to visualize demyelination in the cortex of the brain with a standard MRI. This is the part of the brain where most of the important neurons are located. We also know from other studies that damage to the cortex of people with MS is very strongly associated with both physical problems and cognitive problems

2. The white spots visualized on a standard MRI represent only a small fracture of the tissue involved. More sophisticated techniques are required to visualize these so called normal appearing areas of the brain

3. An MRI tells us nothing about the functional connectivity of the brain. For instance, you could have two white spots that are the same size with one causing severe problems because of the disruption of wide spread functional connections in the brain, whereas the other white spot has no significant effect on any functional connections. Like real estate, location is everything in the brain

Hope this helps.

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

Here is My Question:
I am about to begin a new job in a hospital, they are requiring me to have a tdaP vaccine as condition of employment. I have RRMS, is it safe to take the tdap? I am mostly concerned about the pertussis part of the vaccine. Thank you.

Answer:
The tetanus/diptheria/pertussis (tdaP) vaccine is not a live viral vaccine. MS patients have not experienced any unusual or unique problems with this vaccine and it is particularly important for health care workers and pregnant women. It should only be avoided if you experienced a bad reaction to the vaccine in the past.

Good luck

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

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Question:
During an exacerbation, what is happening to the nerve cells to cause the body to respond?

Answer:
During an MS exacerbation, some unknown event or stimulus within a circumscribed region of your nervous system precipitates an inflammatory reaction. This inflammatory cycle includes breakdown of the blood brain barrier (often but not always identified briefly by contrast enhancement after an MRI) and recruitment of inflammatory cells (lymphocytes and macrophages) to the region. This less to further inflammatory injury to myelin and neural elements. Many of the initial symptoms of a relapse are caused by temporarily malfunctioning of neural elements that recover quickly. Resolution of other symptoms require clearance of myelin debris, remyelination and repair of synaptic connections. This can take weeks or months to complete. Axons that are transacted (cut in half) are irreversibly injured and cause permanent tissue damage and sometimes permanent symptoms. 

The inflammation is eventually brought under control spontaneously, damaged tissue is cleared of debris, oligodendrocyte progenitor cells (the ones that make myelin) are recruited to the site of injury and attempt to repair demyelinated axons (with some partial success), dendrites sprout from neurons to create new connections and an astroglial scar is formed. 

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

Question:
I was recently diagnosed with R/R MS and began taking Tecfidera on 03/31/15. On 04/20/15 I started to notice hair loss which continues each time I wash my hair. I know it is not listed as a side effect however there have been no other changes to my routine or diet other than the Tecfidera. I see numerous comments on the MS Connection website about other MS patients with hair loss attributed to Tecfidera which caused them to stop taking it, including a concerning comment that the hair did not seem to regrow once the drug was stopped. My questions are, have you had other patients report hair loss with Tecfidera? If so did the hair loss subside with time or do you believe that this is a side effect that would typically subside with time? If so how long is reasonable to wait and see? If the hair loss does not subside and I stop the medication, would the hair loss typically regrow or would the hair lost potentially be permanent? Lastly, my second choice for medication was Copaxone, which also does not list hair loss as a side effect however I saw MS Connection comments regarding hair loss with this drug as well. I would hate to stop the Tecfidera only to find the same problem with Copaxone. Do all MS drugs have the potential to cause hair loss or is it perhaps caused by the MS itself? Any advice is greatly appreciated.


Answer:
Hair loss is a common concern expressed by many people when they visit their doctor. Unless your hair is falling off in massive amounts and leaving large patches of bald skin, as occurs after many forms of chemotherapy and called anagenic effluvium, you are likely experiencing a condition called Telogen Effluvium. To understand this better you need to know a little about the normal hair growth cycle. 

In most people 80-90 % of hair follicles are in an active growth stage (called the anagenic stage) and the rest are in a resting stage (called the Telogen phase) getting ready to fall off and make way for new growth. Any number of events including post emotional stressors, diet changes, hormonal changes, post partum, nutrient deficiencies, medical conditions (esp.  thyroid disorders) and many medications can push a greater number of hair follicles suddenly into the Telogen phase. Interestingly, the hair does not immediately fall out when this occurs; instead, the hair follicle stops growing and involutes over 2 to 4 months before it falls out.  The loss of hair or hair thinning is usually complete within 6 to 9 months after the condition that caused you to experience Telogen Effluvium. As soon as a hair falls off the new hair follicle begins to grow, but it takes months before this becomes noticeable. 

People with telogen effluvium will notice more hair on their brush and their pillow in the morning and the hair. A typical person will lose about 100 hairs per day whereas a person with telogen effluvium will lose 300-500 hairs a day. The hairs that you collect will have the typical appearance of a hair that has gone through the telogen phase. Most noticeable, is the small white hub at the end of the hair that was attached to the scalp. 

It is most important to understand that Telogen Effluvium is almost always a temporary condition though it takes time to recover.

Let’s return now to your question. You started Tecfidera on 3/31/15 and began to notice hair loss 20 days later. Telogenic Effluvium that begins this rapidly would also be expected to recover within 6 months, often without even stopping the medication. This is certainly the case with Teriflunomide. It is more typical for the hair loss to only become noticeable 2-4 months after the onset of the causative event, and then continue unless the offending condition is reversed or stopped.

It is impossible for me to determine if there is a causal link between the initiation of treatment with Tecfidera and hair thinning. We can only determine cause and effect from  placebo controlled trials and this was not an observed side effect attributable to Tecfidera in clinical trials. If your hair loss is severe and bothersome to you then you have a number of choices. First, ask your doctor if there are other potential causes of hair loss. For instance, antidepressants or recent stressors are common causes. If there no other identifiable causes you have some choices to make:

1. If your doctor thinks you are a good candidate for minoxidil, you can continue on Tecfidera, and take minoxidil for the next 6 months to stimulate hair growth.

2. You can stop Tecfidera and take another medication for your MS but don’t expect the hair loss to stop until it has run it’s course.

I hope this helps.

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

Question:
My question is how long will 'Cymbalta'60 mg, for neuro pain take to work? I asked my doctor and he told me for pain it takes longer. I have been taking them now 18 days and getting desperate to know if I am wasting my time. My doctor is away and my neurologist and I feel helpless.....pain is not getting any less. My mood is changing not for the better, but not sure if its this medication or just me feeling down from the pain, my husband has his operation next week and my boys have exams...meaning at home all the time. I lost hope.......Thank you in advance. I appreciate this web site very much. I feel I have someone I can ask.

Answer:
Tim Vollmer in Denver published a placebo controlled study on the use of Cymbalta (duloxetine) for MS related Neuropathic pain in 2014. Those patients who responded began to see benefits at 1 week and definitely noticed benefits by 2 weeks. The numbers need to treat to achieve a 30 % reduction in pain (what is considered meaningful) was 8. This means that 8 people must be treated with this drug to achieve a 30 % reduction in pain for 1 person.

I usually add pregabalin (Lyrica) if a patient is not beginning to respond by 2 to 4 weeks. Talk to your doctors about adding another medication. If you are not tolerating the Cymbalta you should also discuss stopping it with your doctors.

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

Here is My Question:
What would be considered "normal" amount of trips/falls? In the past 30 days I have broke a finger at the joint, broke a toe, and acquired a nasty burn while cooking.. I use a variety of mobile devices depending on the day's needs. I try to find balance between doing what I can without aid, and using aid when it is necessary. How does one challenge themselves, and not get hurt so often? I am not willing to "throw in the towel", and feel if I don't fight with all I have, I will be full time wheel chair sooner than necessary. Am I thinking incorrectly?

Answer:
The honest answer to your question is that no falls would be the “normal” amount of falls for someone to have. Having had 3 falls in one month is concerning, especially because you have had some injuries as a result of the falls.

My first recommendation is to ask yourself a few questions:

1. Do you have any new MS symptoms?
2. What are you doing when you have fallen?
3. What time of day is it?
4. Are you tired?
5. Are you walking in a cluttered or busy area?
6. Are you distracted?
7. Have you had any medication changes in the last month?

I also recommend you call your neurologist and report the recent increase falls as well as your injuries.  If you are having new MS symptoms you should report those as well. If you aren’t having new symptoms, it is still important to determine the potential causes of your falls, so you can correct them! There are a lot of different reasons why you may be falling, and it is important to determine what the reason is. The neurologist can rule out a medical cause of the falls (MS exacerbation or medication changes) and can also refer you to a physical therapist. A physical therapist can help determine non-medical reasons for why you might be falling (muscle weakness, impaired gait or impaired balance) and teach you ways to help prevent falls in the future.

Often times preventing a fall can be as simple as making modifications to your environment, or being more mindful of what you are doing.  Sometimes it’s a matter of using the “right device/aid” depending on the task you are doing! I certainly can understand your mindset of “not wanting to throw in the towel” but there are definitely ways you can be safer without giving up and becoming wheelchair bound!!!

The following link will provide a PDF brochure from the National MS Society which provides excellent information about minimizing risk of falls!  It provides information on reasons why people fall and how you can modify your environment and daily activities to minimize your risk of falling!  It is a wonderful resource, but would best be used in conjunction with physical therapy!

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Minimizing-Your-Risk-of-Falls.pdf

Falls are not something to be taken lightly! As I tell my patients; you have enough to manage with your MS alone, you don’t need any broken bones or head injuries on top of that!!!! I hope this helps answer your question, and gives you faith that you can be safe without giving up your mobility and independence! Hope this helps.

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

Here is My Question:
I'm a 49 year old female, and several months ago my vision seemed off! At first I though it was my glasses however it kept getting worse until February 3rd when driving to work everything was double, cars, lights, people, everything!! I left work and drove myself to the doctor (bad idea) but I made it and haven't driven sense. I was admitted to the hospital for a whole battery of test including a cat scan and an MRI which eliminated all the usual suspects and was told it was probably viral and should clear up in a few weeks but it didn't. 

So here I am 3 months later with no diagnosis and more symptoms. My left leg is now numb with itching and pain! I use a cane and walker to get around because my balance is affected, my short term memory and speech are off, and my eyes are dancing from side to side, and we won't talk about the other stuff. The 2nd MRI with a better machine shows 3mm ovoid T2 hyperintense focus posterior superior right temporal lobe, 3mm T2 hyperintense focus posterior inferior right temporal lobe, and 4mm T2 hyperintense focus right lateral midbrain. MRI conclusion says appearance is nonspecific but differential consideration particular given the hyperintense focus in the right lateral midbrain includes demyelinating process/multiple sclerosis. 

My neurologist says the lesions are not indicative of MS but has no other diagnosis. I'm sure my story is a common one with no definitive test for multiple sclerosis diagnosis can be a process off elimination. But as the patient the scariest part of this journey is the uncertainty off not knowing! I think an MRI with dye or spinal tap would give me a diagnosis but my neurologist is following a different path of physical therapy and a referral to a doctor to run test in cognitive issues. I already know my brain is messed up and physical therapy for what? I feel a neurologist who specializes in this disease would be able to see what is really wrong with me therefor I now have an appt on july 14th to see Dr. Kinkel himself, on cancellation list for first avail! what test do I need to get a diagnosis? Am I too old? Also I have had numbness in my arm for years, was that the beginning? and the heat knocks me out another MS sign? Any thoughts on this issue would be greatly appreciated, thank you.

Answer:
MS is a very good possibility and it may well be that you would benefit from additional testing. I am glad to hear you are scheduled to see me but why do you have to wait until July 14th? We have openings at Hillcrest and probably in La Jolla much earlier than July 14th. I would suggest calling my clinic coordinator, Shivon Carreno, at 619-543-5443.

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

Here is My Question:
How do you prevent severe muscle cramping in legs? Magnesium levels are normal but still taking supplement daily. Cramping begins in feet and continues up into groin sometimes the muscles in shins and calves remain cramped for two or more days. The best way to describe them are severe "Charlie Horses"

Answer:
These symptoms can be due to different causes and should be evaluated by your doctor.  With MS, particularly with spinal cord lesions, the muscle relaxing stimulus from the spinal cord is disrupted which leads to muscle spasticity in the legs which can produce charlie horses.  In this case, good stretching of the legs can be quite helpful.  There are also anti-spasmodic medications that can help in more severe cases which can include baclofen, tizanidine, and in cases where the cramping is worse at night, low dose clonazepam.  While magnesium can lead to muscle irritability when low, this is not the most common cause of these symptoms in MS patients.

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

Benjamin J. Osborne, MD, is an attending physician in the Department of Neurology and an associate professor of neurology and ophthalmology at MedStar Georgetown University Hospital. Dr. Osborne is board certified in neurology, with concentrations in neuro-opthalmology and multiple sclerosis.

Dr. Osborne evaluates and treats patients with complicated vision problems (usually due to neurologic disease) whom are referred by other specialists. The neurological diseases that often cause such vision problems that Dr. Osborne treats include multiple sclerosis, myasthenia gravis, pseudotumor cerebri, thyroid eye disease, unexplained vision loss, optic neuritis and papilledema. Dr. Osborne and his team participate in field testing and optic coherence tomography (OCT). He has published numerous works in journals in his fields, and is currently active in multiple ongoing research studies.

We are thrilled that Dr. Osborne will be answering your questions about vision for HealthCare Journey.  Please welcome him!

Question:
There is a treatment for people with MS having HSCT, stem cells done in Russia, Singapore, the main countries as of yet. There is a long waiting list and it is not very cheap. My concern is the small percentage of deaths and complications. My MS is not active although I seem to have neuro pain and other issues, but not bad enough to have this treatment as of yet. Although the woman that started all this called Kristy Cruise who was on 60 minutes in Australia, has had everyone following her in her footsteps. Her MS was inactive but had her treatment in Russia with success. My question is what do you think of HSCT treatment and how will this treatment effect the "anxious" people?

Answer:
Hematopoietic stem cell transplants (HSCT) have featured prominently in the news for the past year but have been used for over 15 years to treat rare cases of aggressive MS at several centers in the US, Canada and Europe. This is not an approved indication for the treatment of MS and therefore not covered by insurance. Because of the prohibitive costs in the US, Canada and Europe, many people are traveling to Singapore and other countries able to provide HSCT and other medical procedures at a lower cost and, in some cases, fewer complications by well trained specialist. I am not aware of the facilities available in Russia. The real issue is whether HSCT are ready to be used on a wider scale in the treatment of MS. I believe that based on the current evidence, the answer is no. However, people should be able to make there own decision on this issue, as there is evidence to support HSCT in certain cases. My usual response is to advise people on the degree to which I think they may or may not benefit from this treatment.

Discuss this with your physician as I do not know the specifics of your case.

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

PLEASE NOTE:  The information/opinions on this site should be used as an information resource only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

Here is My Question:
I have the flu, vomiting, diarrhea and can hardly move. Will my MS get better soon?

Answer:
Gastrointestinal flu viruses, often make MS symptoms worse for direct or indirect reasons. Direct reasons may include fever or activation of your immune system; secondary reasons can include dehydration, electrolye imbalances and failure to absorb needed medications. More severe GI infections can cause bleeding and severe anemia.

The most important thing is to notify your doctor and make sure your underlying “Flu” symptoms are due to a common virus and not some other condition. Most GI flu that cause vomiting and diarrhea last no more than a day or two. 

Other than this recommendation, it is most important that you stay well hydrated and keep your temperature down. If your mobility is significantly affected and you are finding it harder to take care of yourself, you may need to go into the hospital for treatment.

Hope you feel better soon.

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

Here is My Question:
Is it safe for MS patients to use facial fillers, and what type would be the most safe? Thank you!

Answer:
There is absolutely no credible information available on the use of facial fillers in MS patients to help me answer your question. I suspect there are many people with MS having this procedure done, but I have not heard of any specific concerns related to MS. My understanding is that there are specific types of fillers (hyaluronic acid, autologous substances like fat or plasma extract and synthetic) for specific indications and all have their pros and cons. It is most important that the procedure be done in a medical setting by an experienced physician. Most complications are related to inferior products, contaminated products or poor technique.

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

PLEASE NOTE:  The information/opinions on this site should be used as an information resource only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

Here is My Question:
What is the progress concerning generic copaxone?

Answer:
The FDA  approved the Sandoz generic copaxone on 4/16/15. When it will be available is another question we cannot answer right now.

Revere (Rip) Kinkel MD

Here is My Question:
I was diagnosed with relapsing remitting multiple sclerosis in 1999. My first and only symptom was a burning sensation on my left leg. It was controlled very well after some trial and error with 1200 mg of gabapentin. I also had started on Avonex. 

In 2003 I had a relapse resulting in dragging my right leg when fatigued. I switched to Rebif, had 3 days of Solumedrol, but the right leg issue persisted.

In 2008 I had a major relapse which left me unable to walk from horrible balance issues and weakness, nystagmus and loss of sensation ( about 75% ) and horrible burning & pins and needles pain in all extremities. The nystagmus has improved mostly. I've had PT which helped with the weakness.

I switched to Tysabri until 2013 when I tested JC+ and am now on Rituxan.

I've had no additional relapses, but the pain is horrible. I'm now on 1800 mg Gralise, 300 mg Lamictal. I've previously tried Lyrica (150 mg 2X), Cymbalta (60 mg), Nortryptaline and I'm getting only minimal relief. My pain level is usually an 8.

My neurologist is almost as frustrated as I. This is now my 3rd neurologist (MS specialist). He's mentioned a pain management Dr., but I'm very reluctant to take a narcotic. Can you offer any suggestions?

Answer:
Neuropathic pain can be very difficult to treat, as you’ve learned. There are several medications you could still try, but you may benefit best from an integrative pain management approach.  Just as you found it necessary to search for a good neurologist, you may need to do the same to find a good pain specialist. 

Although we always hope to eliminate your type of pain, the main goal is to gain control of the pain. Chronic pain such as you’ve described creates a number of secondary effects that must be managed. These include depression, sleep disruption, daytime fatigue, reconditioning, and altered interpersonal relationships to name just a few. Pharmacological strategies could include the use of mexilitine or intrathecal Ziconitide, a conotoxin approved for neuropathic pain that is infused into your spinal fluid through a pump. You may also benefit from the judicious use of medical marijuana if this is available to you. These pharmacological approaches should be combined with a graduated exercise program, yoga, mindfulness training and counseling as needed. I agree with staying away from narcotics.

I hope these thoughts help.

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