Here is My Question:

I have MS and my wife has Shingles and wanting to know if one could aggravate the other. At the present time both are in remission. I would prefer not to aggravate her systems, and her mine. Is there anyway we can coexist with these two? Thanks for your help. 

Answer:
As long as you are immune to varicella virus (chicken pox) you should not be affected by your wife's Shingles. Hope this answers your question.

As an aside, if anyone wants to know about the Shingles vaccination and MS you can read a previously asked question and answer READ MORE

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

Here is My Question:
I began taking Tecfidera 4 months ago, which was approximately 10 weeks after the onset of my first MS symptoms and subsequent diagnosis. I just had a follow up brain and c-spine MRI which showed no new lesions however the active lesion at the time of my diagnosis has grown from 6mm to 9mm. My neurologist is suggesting that I change medications, however I have had minimal side effects with Tecfidera so am hesitant to make a change. Should I take the enlarged size of this lesion as a sign that the Tecfidera is not working or is it more likely that the lesion increased in size during the 10 weeks before I started the Tecfidera? 

Answer:
Your case exemplifies one of the several reasons why I try to obtain a new baseline MRI 3 months after starting a DMT. Even under the best circumstances, there can be a delay between the date you prescribe a DMT and complete a start up form, and the date when it is actually started. Common reasons for this delay include prior authorizations and written appeals, the requirements of which are increasing in frequency. This delay averages 2 to 12 weeks. 

It is uncommon for us to change a DMT because of new or enlarging lesions observed on a new baseline MRI 3 to 4 months after starting a DMT. The main exception is an individual with more than 2 new or enlarging lesions with at least one lesion enhancing after the administration of gadolinium. Another exception is an individual with persistent MRI and clinical activity more than 3 months after starting a DMT.

You are correct in suggesting that the enlarged T2 lesion could have materialized in the 10 weeks prior to starting Tecfidera. If the lesion is both enlarged AND enhancing then it probably developed more recently. Even if the enlarged lesion developed more recently, it is probably an insufficient reason to consider changing treatment. It would be a good reason to repeat the MRI in about 6 months to make sure you have remained stable. Repeat the MRI sooner if you should develop new symptoms.

Good Luck

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

Here is My Question:
My MRI's have been normal for both spine and brain but I hear people with MS have had negative MRIs for years then lesions show up. What do you believe when you have had blood work all done and still have symptoms such as numbness, stiffness in legs, head feels like I drank too much? I'm very tired all the time. It's only been a year since this all started. I just had an MRI last month and it was negative. Is it just too early to have lesions show up ? 

Answer:
It is very hard to understand the issues involved given the information provided. Normal MRI scans are rare in MS. The presence of repeatedly normal MRI scans of the brain and spinal cord often means that another problem is responsible for a persons symptoms. And there are many different disorders that can cause the symptoms you describe. Why don’t you ask your doctor to discuss the entire differential diagnosis of your symptoms and findings with you, so you can gain a better understanding.

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

Here is My Question:
So, I am up to 4 lesions on my brain now. My doctor wants me to start on a DMD. He is hoping to start me on Tysabri, but there is a risk of PML so I am having a blood test for the JC virus in the morning. I was wondering what your thoughts were. He's also considering Copaxone, Aubagio or Avonex and has kind of left it up to me to choose. Any insight would be a blessing. 


Answer:
It is somewhat hard to provide advice given the information you’ve provided but let me give you some information to help you think through the process of making a treatment decision

1. The average person with MS has more than 4 lesions on MRI when they present with their first symptoms of MS.  

2. I am assuming you have few outwardly apparent problems from MS which you be typical for someone early in the course of the disease. How MS is affecting you at present is not stated in your question

3. There are no validated treatment effect modifiers for any of the disease modifying therapies. This means that there are currently no tests or features that tell us whether a person will respond to a particular treatment . The only current treatment modifier is a progressive disease course. Progressive disease is a negative modifier meaning that this predicts non response to all current treatments.

4. All the DMTs mentioned in the list are potential treatment options for a person who has never been on treatment. Given the information provided I am not sure I would consider Tysabri even if you were JC virus antibody negative, but your MS specialist probably knows more about your case. That leaves you with Avonex (a once a week injection with flu like side effects), Copaxone (a daily or three times a week injection that hurts and causes skin reactions in many) or Aubagio (a pill that is generally well tolerated but may cause a little hair thinning for a while and requires some monitoring blood tests for a few months). 

This is a situation where it is nice to have choices. The last three options mentioned are remarkably safe, so start with the one that fits your lifestyle best. 

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

Question:
I went to see the neurologist recently and during the visit there was a medical student. Is it okay to ask the student to leave. I didn't realize until I left the office that I didn't get into some issues because that student was there. Do they have to have a third party in the room? I am considering making another appointment and asking to just see the doctor.

Answer:
Great question. You absolutely have the right to ask the medical student to leave. If you feel uncomfortable with this request, ask to speak to your doctor alone for a minute and inform him or her of your request.  You can do this at any time during your visit.

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

Here is My Question:
What are Plegridy's ingredients?

Answer:
Plegridy is Beta interferon 1a (identical to Rebif and Avonex) with a Polyethylene Glycol attached to increase the apparent size of the molecule and decrease its clearance by the kidneys. This increases the availability of the interferon so you can take fewer injections.  Pegylation (attaching a polyethylene glycol chain to a biological molecule) is a common trick used by pharmaceutical manufacturers to increase the duration of action of a biological agent for many disease states.

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

Recently we had a question about tips for exercising in the heat.  We had a few more tips come in so we added them...so here they are...

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/exercising-in-the-summer-and-ms

Here is My Question:
I was JCV- in June 2014, Dec 2014, and in March 2015. Somehow in early July 2015, I am suddenly HIGHLY JCV+ over 2.0.

Can you help me understand how that happened. I know JCV is a bit of an unknown, but what the heck? I had no major changes over those months, no sickness, no new medicines, no travel, no new pets exposure.

Also, I'm on Tecfidera & soon to transition to Gileyna. I see both Tecfidera (w/ a PML warning) and Gilenya (w/o a PML warning) have at least 2 cases each of associated PML. Is it smart to make the switch at all given my JC status?

Thanks

Answer:
The John Cunningham Virus, abbreviated JC virus, causes no symptoms or illness at the time of exposure in most people. That said, there is also no evidence that a sudden increase in JC virus antibody levels has anything to do with recent exposure to the virus. Many people, if not most, who are JC virus antibody negative have already been exposed to the virus. The virus periodically replicates inside us and this process may lead to an increase in JC virus antibody levels .

The most important piece of information in your message is the fact that you are not even taking Tysabri. JC virus antibody levels are ONLY used to assess your risk of PML while receiving Tysabri. The rate of PML is far too low in either Tecfidera or Gilenya treated patients to make this a useful test in patients on these treatments. In the case of Tecfidera it is far more important to monitor lymphocyte counts.

A little math will help you understand: We know that the overall risk of PML in all Tysabri treated patients is 1 in 1000. If you are JC Virus antibody negative your maximal risk of PML is 1 in 10,000 and if you are JC virus antibody positive that risk is 1 in 100 after 2 years of therapy (approximately a 100 fold difference since approximately 50 % of patients are JCV antibody positive).  If JC virus antibody titers are predictive of the risk of PML in MS patients on other treatments and this relative risk increase is the same for other treatments (BOTH TOTALLY UNKNOWN BUT ASSUMPTIONS FOR THIS EXERCISE IN MATH), then the utility of this test will depend on the overall risk of PML in a person receiving treatment with either Tecfidera or Gilenya. At present there is no evidence that the risk of PML on either drug is more than 1 in 25,000. (compared to 1 in 1000 on Tysabri). Therefore, if (and again this is an unknown)  high JCV antibody levels increase the risk of PML to a similar extent in people on Tecfidera or Gilenya, then your highest risk for PML would be 1 in 2,500 (25,000 divided by 10). In all likelihood these numbers overestimate the risk.  A risk less than 1 in 2500 is not useful for making decisions unless your Lymphocyte counts drops too low.

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

Here is My Question:
I have had secondary progressive MS for a number of years now. My neurologist stopped imaging my brain and spine several years ago. Are there medical guidelines for the frequency of MRIs or does it just become unnecessary at some point?

Answer:
The recent guidelines for monitoring MRI activity do not recommend regular MRIs in people with well established secondary progressive MS. The type of standard MRI obtained in usual practice give us very little information at this point in the disease. In the future this may change as we begin to apply new techniques for automated image analysis to guide therapeutic decisions, so stay tuned.


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

Thanks to everyone who donated to Donn's NMSS Muckfest team (his team's name is healthcarejourney.com). This is from Donn..."I just received an email from the National Multiple Sclerosis Society informing me that our team raised the most money in the state over the past 7 days thanks to your contributions! (We had asked you for your donation during this 7 day period). We will be styling in a 20 x 20 team tent at MuckFest MS on August 1st!!"

There is still time to donate to Donn's healthcarejourney.com team can raise even higher in the rankings so if you would like to donate, here is the site to do so 
http://main.nationalmssociety.org/site/TR/MuckFest/MIGMUCKEvents?team_id=404269&pg=team&fr_id=25326

Please note that all donations are going to the National MS Society.

We have been working very hard and for a long time to bring you this new image storing service! For a limited time, you can create your free account and upload and store your medical images (MRIs, CAT scans, etc.) for FREE for LIFE!  TAKE ADVANTAGE OF THIS!!!!

HealthCare Journey partnered with StatRad, a national technology leader in the field of radiology, to provide you with this service.  THIS HAS NEVER BEEN OFFERED TO PEOPLE WITH MS BEFORE (or to any patients regardless of disease, as far as we know).

SPREAD THE WORD, SEND THIS OUT TO EVERYONE YOU KNOW WITH MS!  No gimmicks, no strings attached.  That is what HealthCare Journey is all about.  Truth and quality.  Help us spread the word and go find those DVDs and CDs with your images on them!

We can only provide this service for free for a limited time, so take advantage of it NOW!

Find out more here...http://www.healthcarejourney.com/store-your-images.html

Sincerely,
The HealthCare Journey Team

Here is My Question:
Heat and MS , particularly, on the water in the summer!! I am a 68 year old man with secondary progressive MS. I have been rowing with a cooling vest for 4 years, but, am curious if there are others with MS rowing in the heat. Is there any source for folks with MS exercising hard in the summer?

Answer:
That is fantastic. Keep it up and send us pictures. I met an MS patient who surfs and just falls in the water to get cool. However, rowing is a whole different story and depending on where you are rowing getting in the water might be dangerous (dirty water or currents) and difficult to get in and out of the boat safely.

We don't know of any source for people exercising hard in the summer, but here is a blog by written by someone with MS who is focusing on exercise http://www.activemsers.org/gear.html 

You might also want to try contacting Spaulding Rehab that has an adaptive rowing program and they might have some helpful tips http://spauldingrehab.org/about/events/adaptive_rowing_harry_parker

One of our bloggers, Liz, also has secondary progressive MS and is an adaptive rowing program so you might want to contact her as well http://www.healthcarejourney.com/patient-blog/ms-and-exercise

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

It’s wonderful that you are participating in rowing, and a cooling vest is definitely the way to go! There are others with MS who are rowing in the heat. Where I work we have an adaptive rowing program, and many of our patients with MS participate.  Other things to consider when exercising in the summer heat is to make sure you stay hydrated!!! I’m sure you’ve heard this before, but it really is so important! So many of our body systems rely on water to work properly, and when you are dehydrated not only can you become very ill, but you will fatigue much more quickly.  Additionally, trying to plan your exercise at cooler times of the day is a good idea too. The hot summer sun isn’t good for any of us, so if you can exercise earlier in the morning or later in the afternoon/evening, you will stay cooler and protect yourself from the sun and dehydration!

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


I too am an enthusiastic rower with secondary progressive MS. I have transitioned to an indoor

adaptive rowing program. Depending on your personal goals, the program can accommodate the casual to the competitive.  A number of us even competed in the annual Crash B's at Boston University. When I to go out onto the river, I make sure that it is early in the morning before the heat has set in and that I am rowing with a few strong bodies in the boat just in case I need to take a rest. If you want more information, check out: 

http://www.spauldingrehab.org/research-and-clinical-trials/exercise-persons-disabilities

Here is My Question:
Is it dangerous to drink alcohol when an MS patient has the JC virus?

Answer:
This wins the funniest question of the year. Drink away and enjoy :)

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

Here is My Question:
Not sure if Tysabri is working as I have more symptoms but no relapse.

Answer:
There are a lot of reasons a person with MS may experience persistent fluctuating MS symptoms despite inactive disease. I would talk to your doctor about these symptoms before concluding that a disease modifying agent is not working

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

Wow! We did it! Many people with MS have told us that there is a need for accurate and dependable information regarding health and wellness treatments for MS. 

So...we are seeking out those professionals who have accurate information and can provide you with it so you can make effective decisions regarding your MS Journey with multiple sclerosis and have created the first Virtual Health & Wellness Center for MS!

Cooking dinner?  On vacation?  Sitting in the car? CLICK HERE and listen to our new "HealthCare Journey Radio," where we interview our first guest, Mindy Eisenberg who teaches adaptive yoga for multiple sclerosis.  Note that Mindy's book, Adaptive Yoga Moves Every Body isn't available yet, but when it is we will let you know!  

Next month we will highlight massage for MS.  Interested in a specific health and wellness topic?  Let us know!

-The HealthCare Journey Team

Here is My Question:
My white blood cell count is 300 and my lymphocyte count is between 800 - 900. Is this OK?

Answer:
Whether this is okay depends on other conditions you have and treatments you’ve received. The majority of the time counts in this range in most people with MS on a Disease Modifying Therapy (DMT) are entirely expected and no reason to worry.

Many of the DMTs, such as all the interferons (i.e. Avonex, Betaseron, Rebif, Extavia) and Tecfidera, will lower white blood counts in this range. Gilenya will often lower WBCs much more than this amount. Copaxone rarely decreases WBCs and Tysabri will increase WBCs.

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 common for a MS patient to experience weight loss while on Tecfidera ?

Answer:
Weight loss is not common on Tecfidera unless you have persistent gastrointestinal side effects like lack of appetite, nausea, abdominal pain, cramping and diarrhea. Since these side effects tend to either go away after several weeks or the person stops taking the drug, weight loss tends to be minimal. That being said, I did have a very stoic patient who continued on Tecfidera for many months despite persistent gastrointestinal side effects and that individual lost a lot of weight.

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


#Tecfidera

Here is My Question:
I am a 40 year old female. I had an episode of numbness and tingling and then a tremor about a year and half ago. We did MRIs of my spine and brain and they came back normal. All blood tests are normal. I saw an MS specialist and rheumatologist. All tests were normal. I just had an MRI brain a few months ago and it was normal. I still get tingling and numbness but it goes away quick. I have had bladder spams since this all started. Stiffness comes and goes in my legs. It is hard to climb stairs. I get tired easily. I was tested for Lyme disease and it was negative. Does MS take some time to show up? The MS specialist said the MRI is very definitive (99%) and she said MS is a very low possibility at this point. What can an expert tell me?  

Answer:
It is quite uncommon for people with definite Multiple Sclerosis to have normal imaging of the brain and spinal cord over a several year interval. 

You should ask your doctor to tell you what he thinks is going on instead of telling you what you don’t have wrong with you. Prepare yourself with a list of questions and go to your meeting open minded and with someone you trust as a second ear. Try not to make up your mind about what is going on before you’ve heard completely from the doctor. If this is not satisfactory, it may be time to get a second opinion.

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

Here is My Question:
If you have MS and pain and it gets worse does this mean you are having an exacerbation/flare? Does pain come from the brain or your spinal area? 

Answer:
MS-related pain is usually not due to active inflammation in the nervous system.  When inflammation occurs acutely, sensory signals tend to stop at the site of the lesion.  When those electrical signals stop (and do not reach the sensory cortex of the brain), you tend to have lack of sensation (i.e., numbness).  MS pain (if that is the source of your discomfort), may be helped by one of the symptomatic pain medications (i.e., gabapentin, oxcarbazepine, etc) which work at the site of ion channels of the nerves (and augments the pain signal traveling to your sensory cortex).  Of course, your pain may be unrelated to MS, which would need to be evaluated by your physician. Hope this helps.

A. Scott Nielsen MD MMSc