Question:
While waiting on my Tecfidera to arrive, I have been researching. Yesterday I came across this study: http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=137548&XNSPRACHE_ID=2&XNKONGRESS_ID=150&XNMASKEN_ID=900. I am seeking the opinion of a neurologist to see if it is rationale to try an herbal route before Tecfidera. There are several herbs that work on the Nrf2 pathway that Tecfidera is said to work on. If Tecfidera works by reducing oxidative stress, then can't herbs that do the same thing be taken instead? The blend Protandim is cited as working better than Tecfidera on reducing oxidative stress and Protandim is just Turmeric, milk thistle, ashwagandha, bacopa monniera or water hyssop and EGCG or green tea. You may not be familiar with the herbs or comfortable advising on herbal treatments, but is there a way to respond that just addresses what is MOST effective at reducing oxidative stress with the least side effects? Is there anyone you can consult on this? I can't find any medical professionals who are familiar with both pharmaceutical and herbal treatments!

Answer:
This is a really excellent question and gets at the heart of how research works. We either begin with a clinical observation and then try to deduce a mechanism or we begin with mechanistic target, develop a molecules that affect that target and test it is clinical trials. Tysabri is an example of the later form of research; it was thought that blocking adhesion molecules involved in the transit of inflammatory cells across the blood brain barrier would be beneficial. Tysabri was designed to perform this function and it obviously did well in clinical trials.

Tecfidera or dimethylfumarate studies in MS were based on a clinical observation of potential benefit in MS patients receiving this treatment for their psoriasis. This clinical benefit was substantiated in several well designed, large, randomized clinical trials. Subsequently, scientists began investigating potential mechanisms of action and initially focused on Nrf2 stress response pathway effects. There are several other postulated mechanisms of action that are independent of effects on the Nrf2 pathway.

Both Tysabri and Tecfidera are used to treat MS because of the effects demonstrated in clinical trials, not because of their potential mechanism of action. The potential mechanism of action is important only in so far as it provides potential information about disease pathogenesis, short and long term side effects and the ability to develop or discover similar molecules for testing in clinical trials.

Many of the molecules you mention have been shown to have effects on oxidative stress pathways, but they have not been shown to be beneficial in MS or studied adequately. It is incumbent on the makers of these products or the scientific community or both to perform clinical trials with these agents before claiming benefits to patients. I would certainly be reluctant to advise using any of the products mentioned to treat your MS as a substitute for therapies with greater documentation of both their risks and benefits.

-Rip Kinkel, MD

Here Is My Question:
How do you differentiate Multiple Sclerosis from Lyme Disease when reviewing MRI slides of the brain?

Answer:
Here is a link to a previous blog that should answer your question. READ MORE

Here Is My Question:
I am having two surgeries in the next few months; one is to remove a lump in my breast the other is to have a supra pubic catheter placed. I am very concerned about the general anesthesia, can I really end up making the ms worse? I am scared but I don't have a lot of choice.

Answer:
Very good question; many anesthesiology and surgery textbooks still mention that the stress of surgery or perhaps anesthesia may cause a relapse of MS, although there is no evidence (anecdotal or otherwise) in the modern era to support this statement. I have seen old case reports describing transient worsening of MS symptoms following surgery with anesthesia but no reports for many decades. In fact the evidence suggests that surgery, general anesthesia and epidural anesthesia are NOT associated with worsening of MS.

The real question is whether both surgical procedures can be performed at the same time to limit the amount of anesthesia and the combined recovery time from surgery. After all anesthesia has it’s own very small risks, even without MS, and post operative pain from any surgical procedure  often increases muscle spasms in people with MS. Limiting these problems to one surgical episode would be a good idea, although your doctors may have very good reasons not to combine the two procedures. It is certainly an idea worth discussing with them.

Good luck and be brave. Most people with MS  do great with surgery.

-Rip Kinkel, MD

If anyone out there has had these types of surgeries or has some helpful advice for the person that asked this question, please make a comment below.  Thanks!

Here is My Question:
With my MS I have frequent bouts of irritable bowel syndrome and it causes interference with daily abilities, sometimes by making frequent trips to bathroom. What I am wondering is how do I decide if it is the irritable bowel syndrome or MS related?! I know there are bowel problems with MS but not fully educated on the symptoms and what not. I do avoid eating red meat and other foods that can trigger it.... but it seems to be more occasional lately.

Answer:
This is a great question and one that I think many patients with MS have on their mind when they see their neurologist, but may be too embarrassed to bring up at the clinic visit.  

Bowel symptoms are fairly common in MS and can lead to social isolation and to other health problems.  There are many potential causes of bowel dysfunction and it is important to make the doctor aware of the issue so it can be properly evaluated and addressed.  This is an expansive topic, and one that is impossible to fully answer in a blog post; however, I'll outline general principles about the symptoms of these conditions as well as initial steps a patient with MS can take to try and alleviate the problem.

Irritable bowel syndrome (IBS) is a functional bowel problem which means that extensive medical evaluation cannot identify another cause for abdominal discomfort, pain, and variable symptoms of diarrhea/constipation.  IBS is a prevalent condition in the general population and tends to affect younger patients and preferentially affects women more than men (similar demographic as MS), which makes the co-occurrence of these diseases common.  

Bowel dysfunction due to MS tends to manifest mainly as constipation, but some can also experience fecal incontinence (accidents).  When a scar of MS involves the part of the nervous system that helps coordinate signaling to the bowels to evacuate (located primarily in the spinal cord--especially the lowest segment), these bowel symptoms emerge.  Other contributors to bowel problems that are related to MS include:  immobility or sedentary lifestyle, dehydration (ie, avoiding liquids because of bladder problems), poor dietary intake of fiber, and the acknowledgement that many different medications prescribed to treat other MS symptoms can cause bowel dysfunction as a side effect.  All the more reason to review your symptoms with the MS specialist.

For patients primarily experiencing constipation who are mobile and able to walk, general strategies include increasing fiber in the diet (men= 30 to 40 grams/day and women=21 to 25 grams/day), keep well hydrated (while avoiding caffeine and sugary alcohol), and establish a consistent exercise routine (check with your doctor first about exercise).  Implementing this strategy is generally effective but should be done with patience because it can take a few weeks for the bowels to respond.  If this does not improve bowel function, or you are not mobile, then the next step would be to set up an appointment with your MS specialist to specifically discuss the problem.  Depending on how problematic your symptoms are, you may want to alert the doctor early on in the visit that this is your main problem (and other problems may need to take a back seat or be addressed at a future clinic visit).  

Occasionally, these symptoms are more difficult to manage with conservative strategies alone or your symptoms may suggest another problem other than MS that requires the help of a gastroenterologist (digestive system expert).  The gastroenterologist can evaluate for inflammatory bowel diseases (which are seen in patients with MS more often than the general population), food allergies, and infections of the digestive tract which cause bowel symptoms as well.

If you go see your doctor about bowel problems, you may want to print up this article published in the International Journal of MS Care (CLICK HERE TO DOWNLOAD) and take it with you to the appointment or provide it to your physician in advance so they can review it ahead of time.  This article is a good reference for the doctor to help facilitate a productive clinic visit.

I hope this helps.

ASN

Here is My Question:
Are there any funds or scholarship programs that help people with MS pay for complementary therapies? I am aware of the programs through the National Multiple Sclerosis Society, Multiple Sclerosis Association of America and the Multiple Sclerosis Foundation but none of those cover supplements or "alternative" therapies like rolfing, acupuncture, infusions, or therapeutic massage. Do you know of any funds like this? And, if not, can this site start one?! :)

Answer:
We checked around and didn't find anything other than the resources you mentioned (if anyone reading this knows of any, please let us know by using the comment box below). The closest coverage for an 'alternative therapy' that we know of would be from the MSAA which offers a Cooling Equipment Distribution Program, but certain income and other limits apply. For more information, readers may visit www.mymsaa.org or call MSAA at (800) 532-7667. Callers may dial extension 130 to request a Cooling Equipment Distribution Program application.

We have added your idea to start a fund/scholarship program for alternative therapies to our list of things to consider adding to our site!  Thanks for the great idea!

Here is My Question:
Do birth control medications, preferably the Depo shot, interfere with MS medications? From the another side, does the effectiveness of MS medications decline when taken with a birth control medication? My teen aged daughter is having problems with her monthly cycles and the recommendation is to use birth control to regulate the cycles.

Answer:
Your question really has three parts, so let me answer each sequentially:

1. There is no evidence that hormonal contraceptives (HCPs) are harmful in MS patients. In fact, HCPs in teenagers and adolescents may decrease the risk of MS or delay the onset of MS. We do not yet know if HCPs benefit the disease course in patients already diagnosed with MS or if HCPs have different effects in different disease types (relapsing versus progressive)
2. There is no evidence that HCPs interfere with current disease modifying therapies (DMTs) or that current DMTs interfere with the effectiveness of HCPs. Interestingly, I have seen statements on various websites and in product labeling stating that Tecfidera (a new DMT) may interfere with the effectiveness of HCPs, but I can find no data to support this statement. It is possible that this statement is derived from unpublished animal data submitted to regulatory authorities or simply a lack of data on this subject. Because of this statement, it may be best to use a second form of contraception if you are on Tecfidera, at least if your goal is to prevent pregnancy.
3. Many other drugs used to treat MS symptoms may interact with oral contraceptives; two that stand out are tizanidine (Zanaflex) and modafinil (Pro Vigil). HCPs may increase the concentration of tizanidine in the body and lead to increased adverse effects or toxicity whereas modafinil may definitely decrease the effectiveness of oral contraception.
   

Please check with you doctor about the specific drugs you are currently taking and whether they interact in any way with hormonal contraceptives

Rip Kinkel, MD

Here is My Question:
How prevalent is cognitive decline? What can be done to slow the progress. How prevalent is emotional lability, that is related to the disease?

Answer:
I liked your question so much that I wrote a blog specifically on this topic yesterday.
Please let me know if this answers your questions...READ ABOUT COGNITIVE DECLINE HERE

--Rip Kinkel, MD

Here is my question:
Why do people with MS have problems with urination? It is driving me crazy not being able to pee normally!

Answer:
Your frustration is shared with many regarding problems with urination and MS.  Here are some resources for you to read more about it and ways to help manage it:

http://www.healthcarejourney.com/physician-blog/the-idiots-guide-to-urination-and-ms

http://www.healthcarejourney.com/urinationbowel-problems.html

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Urinary-Dysfunction-and-MS.pdf

Here is My Question:
I have always wanted to ask a neurologist their opinion about the case of Dr. Terry Wahls recovery from MS. More specifically, how likely is it that someone in her stage of disease (wheelchair for several years) reverses the disease as much as she did, without help of any medication? Is it possible that all that happened in her case is a giant placebo?

Answer:
Every question begets another question; that is the nature of scientific inquiry. The question you pose is logical but there is no independent data available to provide an answer.

-Rip Kinkel, MD

The short answer is "no".  There is actually no age limit in the diagnostic criteria for MS.  Most individuals diagnosed with MS are between the ages of 20 and 50.  Although this age range is most common, children as young as 2 years of age have been diagnosed and I have personally seen a patient in her 80's coming to medical attention with a first clinical attack.  When an individual experiences the first recognized symptom of MS after the age of 50, we call this "late onset MS".  
 
Even though there is no age criteria for the diagnosis of MS, a stipulation of the criteria warns that the physician needs to rule out alternative diagnoses that could mimic MS.  That is not to say that every reportable mimic needs to be tested for (that would be quite expensive and submit many patients to unnecessary testing), but your personal story and neurologic examination can quickly rule out many possibilities.  
 
It is also important to remember that as we age, all are susceptible to common health problems including high blood pressure, diabetes, high cholesterol, vascular disease, etc.  Patients with MS are no different, and as you may imagine, the diagnosis later in life can be more difficult to tease apart from problems of older age.  If there is ever a question about a diagnosis, it is completely acceptable to seek a second opinion from an independent MS specialist.  

-A. Scott Nielsen, MD

Here is My Question:
Recently I received an article about Radon Therapy. Can you comment on this in relationship to Multiple Sclerosis. Fact or Fiction?

Answer:
I can not really improve on the response given by Dr Andrew Weil to this same question posted on his web site in 2011 (see URL below). Please read it for the details, but the simple answer is that I strongly advise against radon therapy for MS or any condition.

http://www.drweil.com/drw/u/QAA401036/Is-Radon-Inhalation-Therapy-Worthwhile.html

Rip Kinkel, MD

We are excited to welcome A. Scott Nielsen, MD, MMSc as a contributor to the HealthCare Journey website!  A. Scott Nielson serves as an MS neurologist at the Virginia Mason Multiple Sclerosis Center in Seattle, WA. He has been involved in MS patient care since 2001 at the University of Colorado MS center, Beth Israel Deaconess Medical Center/Harvard Medical School, and now in his current position at Virginia Mason.

Dr. Nielsen completed an MS clinical and experimental therapeutics fellowship at Harvard Medical School (2009 to 2011).  He was awarded the Sylvia Lawry Physician Fellowship Award by the National MS Society and matriculated in the Scholars in Clinical Sciences Program at Harvard Medical School.  His thesis on innovative technology in the care of MS patients yielded a Masters in Medical Sciences degree with an emphasis on translational research.  Dr. Nielsen’s fellowship research encompassed the study of ultra-high field MRI and cortical demyelination in MS, development of internet portal use in the care of MS patients, and experimental therapeutics in MS.  Current research includes a clinical-biorepository of MS patients in collaboration with the Benaroya Research Institute in Seattle, WA.  Dr. Nielsen also continues to work on MRI biomarkers to monitor the MS disease process and response to therapy with the intent to validate their use in the routine clinical care of all patients with MS.

Here is My Question:
I stopped taking Tefidera two days ago because my stomach pain was so severe and I had a fever, chills and nausea. Today I still feel like I have a virus and severe stomach pain even though my doctor put me on Singulair for stomach pain. Is it possible I have a virus together with reactions from the drug?

Answer:
The constellation of symptoms you describe—fever, chills, nausea and abdominal pain— would be unusual for Tecfidera and suggest a viral gastroenteritis. You should contact your doctor and see him or her. In the meantime, you made the correct choice to stop Tecfidera until your problem is sorted out by your physician.

By the way, I do not think your doctor put you on Singulair for stomach pain. Singulair is used as a treatment for asthma and one of its main side effects is stomach pain.

Hope you feel better soon.
-Rip Kinkel

Here is My Question:
What efforts are currently being made, or what alternative strategies being explored, by MS specialists and researchers, about natalizumab discontinuation problem? Thank you.

Answer:
I really wouldn’t overstate the problem. It is a minority of patients who experience a significant re-emergence of disease activity 3-6 months after stopping Tysabri. That being said, there are several strategies used to minimize this problem in patients considered at high risk for a significant re-emergence of disease activity (see my prior blog on this issue).

1. Use pulse high dose steroid treatments after stopping Tysabri
2. Switch to another highly active therapy at around the time of the last Tysabri infusion
3. Combination of both

Rip Kinkel

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 was recently diagnosed with MS. I underwent IV steroid treatments. After steroid treatment, my drop foot was gone. Now, a week after being off of steroids, my drop foot is returning. Is it normal for symptoms to return like this after being resolved on steroids?

Answer:
IV steroids can produce amazingly rapid benefits, especially in newly diagnosed patients. However, it is not unusual for someone to experience a little “rebound” in their symptoms shortly after stopping IV steroids. You should contact your MS specialist to inform him or her of this experience. All of us take a slightly different approach to managing this issue; some like myself wait and see if there is any continued worsening before retreating unless the worsening is dramatic; others are inclined to retreat with steroids more quickly and possibly use a prednisone taper for several weeks.  In either case it can take weeks to obtain full recovery from a relapse but 90% of patients do eventually experience almost complete return of function from initial attacks. Good luck.

Rip Kinkel, MD

Here is My Question:
What can you tell me about Tecfidera depressing white blood cell counts? I am trying to decide between it and Copaxone and want to be informed.

Answer:
Your white blood count or WBC includes many different cell types including neutrophils, monocytes, eosinophils and lymphocytes.  All have different functions and loss of individual cell types can have different consequences. For instance, chemotherapies used to treat cancer can suppress neutrophil counts and make patients susceptible to bacterial and fungal infections. Suppressed lymphocyte counts have less predictable effects but when severe and prolonged, such as occurs in patients with HIV infection, can lead to unusual infections only seen in patients with suppression of normal immunity.

Tecfidera decreased mean lymphocyte counts by 30% in the phase III clinical trial that led to its approval by the FDA. This means the investigators compared the average of all the lymphocyte counts in all the patients on Tecfidera in the trial at each time point and compared this average number to those on placebo and the counts were 30% lower in the Tecfidera group. This does not mean that 30% of patients on Tecfidera experience a drop in lymphocyte counts. Overall this is considered a relatively mild and insignificant drop in lymphocyte counts. In fact the mean lymphocyte counts in patients on Tecfidera remained well above the lower limit of normal (lower limit of normal is a below a count of 900). Only 6% of patients experienced a drop in lymphocyte counts below 500 in the trial compared to 1% of patients on Placebo. This is reason that we need to monitor your lymphocyte count while taking Tecfidera; if your count remains below 500 on repeated testing over time and there is no other explanation (such as another medication or illness), then your physician may consider stopping the Tecfidera.

There was no evidence that patients on Tecfidera were more susceptible to infections as a result of this drop in lymphocyte counts during the study which lasted for 2 years, but there remains a concern that a prolonged drop in lymphocyte counts could lead to an increased risk of infections over years of treatment.  

Other MS drugs that cause drops in lymphocyte counts include the interferons (Avonex, betaseron, Extavia and Rebif), Gilenya and Aubagio. The drops in lymphocyte counts are most dramatic with Gilenya (73% reduction in mean lymphocyte counts compared to placebo) but Gilenya has only been associated with a mild increased risk of respiratory tract infections and herpetic infections (e.g.. shingles) and this infection risk has not been necessarily linked to the reduction in lymphocyte count.

Rip Kinkel, MD

Here is My Question:
I have narrowed it down to Tecfidera and Copaxone and would appreciate a clinical and real life comparison of the two. My concern with Tecfidera is long term effects, since the long term effects of Copaxone are apparent due to its longevity on the market. So Copaxone or Tecfidera and why?

Answer:
This is a really good question but I doubt my answer will be of value to you. I can provide comparisons of the two drugs but advising an individual patient on a particular drug requires knowledge of that individual’s disease characteristics.

So what are the comparisons between Copaxone and Tecfidera? It just so happens that one of the clinical trials of Tecfidera used Copaxone as an unblinded comparison arm so we have some information available to compare these two therapies.  The clinical trials results over two years for each of drugs compared to a group receiving placebo was as follows:

1. Tecfidera reduced relapses by 44%, whereas Copaxone decreased relapses by 29%
2. Tecfidera reduced the development of disability by 21%, whereas Copaxone decreased disability by 7% (neither were statistically significant)
3. Tecfidera decreased the development of new white spots on MRI by 71 %,  whereas Copaxone decrease new white spots by 54%
4. 12% of patients on Tecfidera stopped taking the drug because of side effects, whereas 10% of Copaxone treated patients stopped Copaxone because of side effects.
   

Rip Kinkel

Here is My Question:
I was diagnosed with MS 14 years ago. I have taken disease modifying drugs but after a bad experience 5 years ago I have not been on any MS medications and instead eat healthy (nothing processed, just lean meat, fruits, veggies...) and exercise about 5 times a week, including weight lifting and cardio. This appears to be as good as the results of a MS modifying drug. So why should I go back on medicine?

Answer:
This is a great question. People with MS take Disease modifying therapies (DMTs) to reduce their risk of relapses and their risk of the disease spreading throughout the central nervous system as detected by standard MR imaging. Reducing these risks has resulted in modest short term reductions in the risk of residual neurological abnormalities on examination after 2 years of therapy. It is hoped but difficult to prove that these short term (2 year) benefits of DMT result in less disability after many years of treatment (perhaps more than 10 years of treatment).

Does this mean that DMTs are meant for everyone? The answer is no or at least, we don’t know for sure. First, clinical trials include only patients meeting certain entry criteria. These clinical trial participants tend to be younger, earlier in the course of the disease and have less disability than most patients seen in MS clinics. They also have fewer medical problems that can interfere with treatment.

For instance, the average duration of disease in most MS clinical trials is between 5 and 7 years and the average patient has a minimal or no disability (all clinical trials actually exclude patients unable to walk at least the length of a football field). You report having MS for 14 years which already places you in a outlier group. Other information is not provided. So whether you should or should not be on disease modifying therapy depends on your circumstances and disease characteristics.

Now here is a very important point for you to consider: while it is good that you have remained stable for 5 years off of disease modifying therapy this doesn’t mean much in the context of a disease that often takes 30-40 years to create problems for people. Patients often remain stable for intervals of 2-5 years and eventually develop problems from their MS. The real question should be, “what are my risk factors for disease progression and has there been any evidence of recurrent disease during my 5 years off of therapy?” Only a MS specialist with more information would be able to answer these questions for you. Remember the disease can be very active without any changes in your symptoms, at least for several years. If you haven’t checked in with an MS specialist in several years, I would recommend considering this in the future.

By the way the things you are doing for your MS (diet, exercise and life style adjustments) are great and are likely responsible for you feeling as good as you do; keep it up and don’t let anyone tell your otherwise. But stating that the results of these activities are as good as taking DMTs is a false comparison and implies that one is a substitution for the other. Both are usually required for most patients to achieve long term beneficial outcomes.

Rip Kinkel, MD

Here is my question:
What is the treatment for MS?

Answer:
It sounds as though you may be relatively new to MS. The management or treatment of MS can broken up into 6 interrelated categories:

1. Education: What you don’t know can hurt you and what you learn can help you tremendously; this site will help you learn and hopefully achieve better outcomes.
   
2. Secondary Prevention: We do not mean preventing MS, although this may be a goal in first degree relatives (siblings and children).  Prevention in this sense means avoiding complications and eliminating habits that can make MS worsen more rapidly. Prevention must include cessation of smoking (if you smoke), attaining ideal body weight through dietary adjustments, regular aerobic exercise and strength training and remaining physically, mentally and socially engaged and challenged in life.
3. Enhancing recovery from relapses: The standard therapy is corticosteroids and less commonly plasmaphoresis or IV immunoglobulin. Rehabilitation is also an important component.
4. Rehabilitation: This refers to strategies designed to enhance recovery of function and allow you to maintain activities that are meaningful to you.
5. Symptomatic therapy: Many patients have persistent and annoying symptoms that may interfere with life’s activities. Since disease modifying therapies only prevent new symptoms from emerging (if they work correctly) these persistent symptoms must be managed differently. For instance, heat intolerance may be treated with cooling vests, collars or hats; a foot drop may be treated with a brace or an functional electrical stimulation device such as a WalkAide or Bioness device, burning or stabbing pains may be treated with drugs like gabapentin or Lyrica, spasms may be treated with baclofen and urinary urgency with oxybutynin to name just some examples. 
6. Disease modifying therapy: This refers to a group of medications ( interferons (Avonex, Betaseron, Extavia, Rebif), Copaxone, Tysabri, Gilenya, Aubagio and Tecfidera) that are approved by the FDA to reduce the risk of disease relapses and hopefully prevent the disease from worsening over time. Other available treatments may have disease modifying effects but are not specifically approved by the FDA; these include Vitamin D3 supplementation and statins. Many more therapies are still in clinical trials or awaiting approval by the FDA.
   

These categories or steps are not meant to be achieved sequentially although certain steps will come before others. Instead, they are meant to work together to help you achieve the best outcomes possible. They will also change over time so be prepared to continue learning.

It may help you to start by reading two blogs that I wrote in the past for this website The first is called, "Platform therapy for MS" and the second is called "How do you decide on disease modifying therapy".  Both can be found on the treatment page for this website CLICK HERE

Good luck and keep asking questions.
 
Rip Kinkel