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Why Do Some People With MS Stop Following Their Doctor's Recommendations?

1/30/2014

 
Adherence
People often ask me how to get their friends and family to follow their doctor’s recommendations and we, as doctors, often wonder if our patients, particularly those who come in alone for visits, are taking their medications as directed and following other non medicinal recommendations. There is an entire field of research devoted to this topic and some general recommendations that are useful. The most important thing to remember is that this is an ongoing process. Even if a person follows a recommendation initially this rarely lasts without persistent follow-up and attention to the process outlined in this blog.

Let’s first consider the concept of adherence and the process anyone goes through when making a decision. This will help you see where things can break down.

  • A person must be educated or convinced of a need to do something and believe that they are capable of carrying out this activity (Click here to read a blog about self efficacy - http://bit.ly/1cy0Tpu ). Simply being told to do something will never work unless there is a heavy punitive price to pay for non-adherence, such as going to jail or being sent to your room without dinner. Even when punitive measures are employed, they rarely work without good role models, education and addressing other unmet needs. Clearly, becoming angry or upset with friends or family for not adhering to medical advice will not work. It is far better to try to understand their reasons for non-adherence and address them through multiple sources of education. You also are better served by using motivational interviewing to help modify behavior. Be understanding and accept that they at least believe there is a valid reason for non-adherence. Do not be dismissive. Instead, try to reinforce any good decisions they have made in the past such as, “ you know I am so proud of you going to the doctor ”, even if that is the only recommendation they followed. Some people just require more time and education from someone skilled at this process such as nurse educator or social worker. I find it is far better if the doctor is able to devote an entire session to this process at a separate visit instead of the usual visit where all the patients and doctors concerns are addressed. Often there are barriers to individuals getting started that are valid; “I’m too busy”, “it costs too much”, “my best friend told me that drug is dangerous”, or “nothing has worked in the past, why should this work”. Try to be a good role model yourself. Family members complaining about loved ones who refuse to quit smoking even though the same family members continue to smoke themselves always amaze me.  No matter what the concern or the reason, these problems with adherence can emerge at any time during the process of following the treatment recommendation; so you need to be vigilant even after an individual has followed the recommendation for years.
  • Depression, anxiety and mood disorders are a main reason for failure to adhere to advice. People become paralyzed by these disorders and unable to act. They have little motivation and their inability to see a “light at the end of the tunnel” makes the entire process of change far too difficult. To have any hope of making progress in this situation requires effective management of the mood disorder. You must address this first and then move to other important issues, even if the patient does not believe this is the main problem. This is part of the art of medicine.
  • Cognitive problems also require a separate section; often family or health care providers do not recognize the problems with cognition even though these problems most commonly interfere with learning, planning and executing a recommended plan of treatment. If this is a possible issue, and it often is, you should address this with the health care provider.
  • The same process described above applies to compliance with treatment. This is defined as not only following the doctor’s advice but doing it correctly, such as taking the right dose at the right time. Often this is easier to address because there are easily modified barriers interfering with compliance such as the cost of taking the medication daily, the pain of the injection, the side effect of the medication, injection fatigue, the complexity of the dosing schedule or a change in the persons schedule that makes it more difficult. Try to find out what those barriers are and work on them. Again, use motivational interviewing and continually look for ways to reinforce all the good things the person is doing.
  • Lastly, the ability to continue following a doctor’s recommendations after several months requires one additional factor; the patient needs to see results. This can be difficult with a condition that is continuing to get worse despite following the recommended treatment. The argument that you would be worse off if you weren’t on a particular treatment is often a bitter and unacceptable pill to follow. This is where it is so important to educate people about what a treatment can and can not accomplish so they can make informed decisions. Getting through this process also requires you to establish explicit goals of treatment with your doctor (see prior blog on platform therapy...http://bit.ly/1dQvqvR) and understanding that accomplishing these goals may require you to do multiple things besides taking a drug.  In the long run, stopping a treatment may be the correct decision but in reality people often make the decision to stop a treatment too quickly. Setting explicit goals helps alleviate this problem.

Dr. Kinkel



 

Stem Cell Transplantation and MS

1/28/2014

 
Question:  The TISCH MSRC has started a Phase I trial for SPMS doing autologous BMT. Are there any there other centers that are involved in this research?

Answer:  Stem cell transplantation procedures for inflammatory disorders like MS come in several flavors:

  1. The oldest type is simply a bone marrow transplant. To my knowledge this is no longer done, which is good since bone marrow aspirations are painful.
  2. There are two main types of autologous stem cell transplantation procedures currently in research studies (I do not know of anyone currently doing allogeneic transplants which requires cells derived from a matched donor and prolonged immunosuppression after transplantation to avoid rejection and graft vs host disease). The key to both types is the requirement of collecting adult stem stem cells from the patients blood circulation after stimulating these cells to be released into the blood stream in large numbers. The first type requires total ablation of all bone marrow derived cells by high dose chemotherapy before re-injecting the patient with their collected stem cells. The re-injected stem cells must then re-populate the bone marrow to create the immune system, red blood cells and platelets required for life. The second type is identical but the bone marrow ablation procedure only eliminates bone marrow derived lymphocytes and spares the cells that make platelets and red blood cells. This procedure is theoretically safer.  These autologous stem cell transplantation procedures are being done at the University of Washington Western MS Center (Seattle), Ohio State University, Baylor,Northwestern University and the TISCH MS Center in New York to name a few centers. This information may be slightly outdated but updated information is available at the clinicaltrials.gov website. This website may also list other sites doing stem cell transplantation research.
  3. The third type of stem cell transplant is called a mesenchymal stem cell transplant. These have become very popular in recent years particularly in Europe. Mesenchymal stem are readily collected from the blood but must be stimulated to proliferate and grow in culture outside of the body to create large enough numbers for transplantation. This procedure does not require risky chemotherapy with ablation of the bone marrow and presumably has a different mechanism of action, if it works at all. There are many private clinics claiming to provide this type of stem cell transplant, but they do not grow and stimulate the cells outside of the body prior to transplantation; it doubtful that this procedure would be of any benefit other than robbing you of hard earned income.  There are several preliminary research studies of mesenchymal stem cell transplantation underway with the main US study at the Cleveland Clinic Foundation (Dr Jeff Cohen is the PI).

All of these procedures are still considered experimental and can not be recommended at this time.

Rip Kinkel

The Gut - Multiple Sclerosis Interaction

1/27/2014

 
Whether you like it our not, we co-exist with more than 100 trillion microorganisms in our intestines (colon and rectum) that are essential to our health and survival.  These microrganisms (collectively all organisms connected to you are termed your microbiota) in your gut perform essential roles in:
  • synthesizing vitamins
  • metabolizing foods and other chemicals (including drugs)
  • developing and maintaining normal immune function
  • maintaining an effective barrier between the gut and the rest of your body
  • fighting off harmful microorganisms attempting to infect your body

What does this have to do with MS? Well, it turns out that the gut is a major immune system control center that responds to stress, disease, diets and drugs in complex ways that are only beginning to be studied.  Preliminary studies suggest that certain diseases may be the result of exposure to microorganizations and/or changes in the normal microbiota due to improved sanitation and altered diets in western, industrialized societies.

Some observations, such as the increased incidence of MS in populations that adopt western diets, support this hypothesis.  However, a more compelling argument was provided by Dr Jorge Correale, an MS specialist in Argentina. He observed several years ago that MS patients asymptomatically infected with common Helminths (intestinal parasites commonly referred to as worms) experienced a dramatic reduction in MS activity including reduced relapses, new MRI lesions and disease progression.

This benefit persisted as long as the Helminth infection was allowed to persist. If the patient developed symptoms from the Helminth infection (eg. diarrhea, weight loss, anemia) and required treatment to eradicate their worms, their MS activity tended to return promptly.  He was also able to link the beneficial response to Helminth infection to improved regulation of immune responses and reduced inflammatory responses designed to fight off infections. 

They and others have proposed that Helminths were once a common symbiotic parasite in the human gut that helped control human immune responses. This control of immune response helps both the worm and the human; the worm gets to survive destruction by the human immune system and the human experiences less of an inflammatory response to environmental stimuli (foods or harmful organisms) that can cause disease states like allergies, eczema and possibly autoimmunity. Of course, the harmful effects of a symptomatic Helminth infection potentially offsets this control of other disease states.

So what can you expect to read and hear about in the near future regarding alterations in gut microbiota and your multiple sclerosis?

1.     Studies are underway to determine if controlled, asymptomatic infection with Helminths is beneficial to MS. The studies have cute, easily recognized acronyms such as TRIOMS and WIRMS and should report results in the next 2 years. However, it will be very important to extend the observation periods of these studies to ensure that there are no long term health risks associated with chronic helminth infections.

2.     Studies are underway to characterize the diversity and molecular properties of gut microbiota in different disease states and better understand the signaling pathways that result in certain beneficial and harmful downstream effects on human health. These studies will dominate the headlines and draw excessive conclusions that will not be justified until controlled interventional studies are undertaken.

3.     It is likely that you will start to hear about studies of fecal transplantation for diseases like MS.  This is gaining in popularity for certain diseases of the GI tract linked to pathological alterations in gut microbiota, such as Clostridium difficile infection, and will almost certainly spread (excuse the pun) to other disease states.

Is there anything you should be doing about your microbiota now to benefit your MS? Certainly, there are no demonstrated benefits to any particular intervention; but since this has never stopped any of us from trying out new things, here are some suggestions.

1.     The health craze that involves colon cleansing and a return to more natural diets, particularly the Paleo diet, has its roots, knowingly or not, in the concept of altering your gut microbiota. As there is no known harm and many patients report feeling better, it is a program I support, although I personally avoid the colon cleansing part of the routine. I suspect that other dietary alterations such as gluten restriction have a similar effect. In general my recommendation on diets is that an individual should shop around the edges of the grocery store and at farmer’s markets.  Edge shopping at grocery stores specifically means avoiding the processed foods and grains in the aisles and confine your shopping to the produce, meat, poultry, dairy and nuts section. There are many variations on this theme but one should try to at least accomplish this basic approach.

2.     Probiotic supplements are very popular but expensive and little is known about which products are beneficial or potentially risky in MS. Most of the marketed supplements contain different strains of lactobacillus or bifidobacterium that may have very different effects on your body. These products are more well known for their beneficial effects on irritable bowel syndrome or travelers diarrhea and those containing bifidobacterium strains seem useful for dental gum disease. Generally, for MS patients I recommend fermented foods high in probiotics.  Yogurt with the label, “Live active cultures”, is a good source of probiotic organisms. Other fermented products known to be good sources of probiotics include kefir, sauerkraut, pickles and kimchi.

Bon Appetit


Using Kegel Exercises to Manage Neurogenic Bladder in MS

1/25/2014

 
Question from an MS Patient:  My most limiting problem right now is managing neurogenic bladder. I have an Interstim implant for detruser muscle control. A Kegel program may help, but I want to know more about the frequency of exercises necessary for change. Thank you.

Most patients with MS, particularly those with more advanced disease, have a complicated neurogenic bladder that requires multidisciplinary management. Kegel exercises (also called pelvic floor exercises) are sometimes useful but the results are rarely as gratifying as the results achieved by woman with urination problems from prior pregnancies or aging. Medications and Interstim devices are usually reserved for women who do not respond to Kegel exercises. This being said, I have copied our directions for performing Kegel exercises (these come from the Mayo Clinic) in the section below. If you are unable to voluntarily learn to control the pelvic floor muscles as described in the section below, you should obtain a referral to a physical therapist specializing in pelvic floor exercises.  The physical therapist  will use biofeedback techniques to teach you the procedure.

How to do Kegel exercises
It takes diligence to identify your pelvic floor muscles and learn how to contract and relax them. Here are some pointers:

  1. Find the right muscles. To identify your pelvic floor muscles, stop urination in midstream. If you succeed, you've got the right muscles.
  2. Perfect your technique. Once you've identified your pelvic floor muscles, empty your bladder and lie on your back. Tighten your pelvic floor muscles, hold the contraction for five seconds, and then relax for five seconds. Try it four or five times in a row. Work up to keeping the muscles contracted for 10 seconds at a time, relaxing for 10 seconds between contractions.
  3. Maintain your focus. For best results, focus on tightening only your pelvic floor muscles. Be careful not to flex the muscles in your abdomen, thighs or buttocks. Avoid holding your breath. Instead, breathe freely during the exercises.
  4. Repeat 3 times a day. Aim for at least three sets of 10 repetitions a day.
  5. Don't make a habit of using Kegel exercises to start and stop your urine stream. Doing Kegel exercises while emptying your bladder can actually weaken the muscles, as well as lead to incomplete emptying of the bladder — which increases the risk of a urinary tract infection.
--Dr. Kinkel


MS - When Walking Fails

1/24/2014

 
Shortly after moving to Boston in 2002 I met Lisa Iezzoni, an amazing physician and researcher, who was then co-director of research in the Division of Medicine at Beth Israel Deaconess Medical Center. Lisa was wheelchair bound after 20 plus years of multiple sclerosis and an inspiration to colleagues, students and patients with disabilities. She had fashioned a remarkable career for herself studying health care experiences, outcomes and discrepancies among people with disabilities and eventually moved to Massachusetts General Hospital to become Director of the Morgan Institute for Health Policy.  Her first book, When Walking Fails, is a must read for people with mobility impairments and the health care providers who care for them. This is a literal step-by-step description of the different types of mobility problems, how these problems affect comfort, attitudes, daily activities and relationships, and strategies to improve these problems. The book is narrated in a very personnel manner with frequent vignette’s and interviews that clearly delineate the personal and society barriers confronting individuals with disability. Read it once or multiple times; it will help. If still interested in the topic after reading this book, I also recommend Lisa’s second book, More Than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities (coauthored with Bonnie L. O’Day), published in 2006

Vitamin D and MS -- Let the Sunshine In

1/23/2014

 
For those of you too young to appreciate my reference, Let the sunshine in, was the second of two songs in a medley for the musical, Hair, made popular by the 5th dimension in 1969. Heading west to find oneself as well as sunshine was all the craze at the time, but I am apparently a slow learner since it took me over 40 years to move out west. But I digress; I intended to talk about Vitamin D, the sunshine vitamin, and MS. If you bear with me, I will even provide the name of the first song in the hair medley that accompanied, Let the sunshine in.

First the facts:
  1. Vitamin D supplementation is an essential part of your MS treatment
  2. Most experts agree that Vitamin D3 (instead of Vitamin D2) is the best form to take as a supplement
  3. The usual dose required to achieve the desired 25 hydroxy vitamin D level in your blood  (> 75 nmol/lt ) is usually 5,000 IU to 10,000 IU per day. Lower doses would probably work if the supplements actually contained as much Vitamin D3 as they state on their label. The only way to know if you are getting enough is to have your doctor check your total 25 OH Vitamin D level 3 months after starting supplementation
  4. The best brand of supplement is unknown. Several studies have shown that the actual amount of vitamin D3 in any brand varies dramatically by brand and even within different capsules or tablets within the same bottle.  The best bet is to buy a brand that is USP certified. Nature made is one of those brands but others are available.

Why should you take Vitamin D for your MS?

For many years epidemiologists have appreciated a latitude gradient with MS incidence; namely, the further north you go from the equater in the northern hemisphere or the further south in the southern hemisphere, the incidence of MS rises.  Most evidence suggests that this latitude effect is due to decreasing exposure further from the equator to the ultraviolet B light required to make vitamin D in the skin. More recently we’ve learned that vitamin D is involved in the regulation of the innate and adaptive immune system as well as it’s typical role in calcium and bone metabolism. The evidence in support of a role for vitamin D deficiency in MS is mounting rapidly and includes the following information:


  1. Case control studies in identical twins who do not both have MS reveal lower vitamin D levels in the twin with MS
  2. Lower vitamin D levels in military personnel is a risk for MS at a later date
  3. The nurses health study should a link between low vitamin D and risk of MS 
  4. There is a higher risk of MS among offspring born between April and May compared to offspring born between October and November. This is reversed in the southern hemisphere. The lower vitamin D levels in the mother and fetus have been used to explain this risk during the 3rd trimester of pregnancies ending in April or May.
  5. Preliminary studies suggest that vitamin D supplementation after the first attack of MS (say Optic neuritis) decreases the risk of a second attack. Larger studies are now underway
  6. Decreased vitamin D levels are associated with a higher risk of relapses and progression although the studies are cross sectional and do not prove cause and effect.

To answer many of these questions, several controlled clinical trials are underway in the United States and Europe to determine if high dose vitamin D Supplementation is beneficial in MS.  If you are interested in learning about these studies, please go to clinicaltrials.gov and search for studies of vitamin D in Multiple Sclerosis. Since all studies suggest that doses under 10,000 IU a day are safe, it is most prudent to begin supplementation now unless there is a contraindication to treatment. Please check with your doctor first to determine if vitamin D supplements are safe in your situation.

Now back to the trivia question that started this blog; the first song in the Hair medley was called, The age of Aquarius.

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

Tysabri 

1/22/2014

 
  • Question:  Many patients report feeling worse (feeling more tired, having more walking difficulties, or other symptoms) one week or a few days before the next Tysabri infusion. What do you think this could mean? Is it possible for Tysabri concentration to drop in such a little time? Or could that be a sign that a person is developing neutralizing antibodies (especially if such "cravings" did not occur from the start of Tysabri therapy, but only after a certain amount of time)? Thanks!

We do not have an adequate explanation for this phenomenon at present. If a patient is receiving Tysabri every month, receptor concentration remains well above 90 % in all patients. It is still possible that Tysabri has some direct effects on CNS cell types that follows a different time course, but this seems unlikely.

--Dr. Kinkel

Stress or MS Symptom?

1/22/2014

 
  • Question:  How do you know the difference between a stress reaction or a symptom? As someone who hasn't had text book symptoms and was diagnosed after a seizure, I have struggled to know if something is a symptom or just reaction to job stress.

That is very hard to answer. Generally,  the best way to determine if stress is a major aggravator of symptoms is to perform a simple experiment. Track the intensity of the symptom (s) during the period of stress (perhaps during the work week if that is the potential cause) and during periods when the stress is removed (a prolonged vacation for this example). Weekends are not necessary the best time to determine if work is the cause of the stress, since many individuals find themselves overly stressed by the need to attend to all personal and family matters during the weekend. If symptoms significantly improve on vacation, assuming the vacation is not creating problems, you have your answer.



African Americans and Multiple Sclerosis

1/22/2014

 
Although multiple sclerosis (MS) is less frequent in African Americans, it also tends to be a more severe disease in blacks by almost all measures; their disease tends to start a little earlier, their relapses are more severe with less recovery, their MRI scans show more widespread evidence of disease and injury at the same point in the disease course and they tend to become disabled more frequently and at an earlier age. The reason for this difference in MS severity between whites and blacks with MS is totally unknown but an area of active research.  Most genetic association studies suggest that the genetic polymorphisms associated with MS severity in caucasians are similar to the haplotypes associated with MS severity in African Americans, although these polymorphisms explain only a minority of the reasons for MS severity in any group. Future research will likely define populations by genotype instead of phenotype (i.e. the color of your skin) to help answer these questions since it very difficult to determine genetic background by skin color alone. For instance, a large study in progress to investigate the genetics of MS in African Americans reported that genes of European ancestry ranged from 1 % to 71 % (median 19 %) in their study population.

Preliminary evidence suggests that African Americans may not respond as well to some MS treatments, although the studies are not conclusive. For instance, one study suggested a lower response rate to interferon treatments. Thankfully, another study suggested very good responses to Tysabri. My general approach to treating African Americans with MS is to monitor their response to treatment very closely and escalate to highly active treatments (Tysabri, Rituximab) earlier than in typical caucasian patients. Future determination of genetic/ethnic differences in response to therapy will require large community based research populations currently being assembled to answer these questions. Stay tuned for more information in the next year as research projects sponsored by the Accelerated Cure Project begin enrolling patients.

--Dr. Kinkel

Potential Interactions with MS medications

1/21/2014

 
Question:  I would like to give traditional Chinese medicine a try. Aside from acupuncture, my doctor is recommending taking herbal preparations. Should I be worried about the potential interactions of these herbs and my MS medication?

We do not know of any potential interactions with biological agents (interferons, copaxone and tysabri) used to treat MS. We also do not know of any interactions with Tecfidera. For small molecules like Gilenya and Aubagio, you should ask your MS specialist or contact the company directly to learn of any potential interactions.

--Dr. Kinkel

PLEASE NOTE:  The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician 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.

Tysabri and Secondary Progressive MS

1/21/2014

 
Question:  We know that Tysabri is very effective in reducing relapse frequency and appearing of new lesions, but how effective is it in preventing progression? Or conversion from RRMS to SPMS?

Answer:  Several small studies suggest a benefit of Tysabri for secondary progressive MS. A large definitive clinical trial called ASCEND, funded by Biogen Idec, is underway with expected completion by the end of 2014.

Prednisone vs Methylpredisolone for MS Relapses

1/16/2014

 
Q:  Is it possible that the same person could respond to prednisone, but not to methylprednisolone during a relapse? Aren't they too similar for this to be true?

A:  Prednisone is usually given orally after a series of  methylprednisolone infusions. It often appears that the prednisone works better if the benefits from the combined steroid treatments do not kick in while you are receiving the methylprednisolone infusions. In addition some patients experience side effects on the higher doses used with methylprednisolone and these side effects may counter any apparent benefit.


Using ACTH and IV Ig for MS Relapses

1/11/2014

 
  • Q:  When should drugs (like ACTH or IV Ig) be given for relapses? How is it decided whether the relapse should "run its course", or be managed with these drugs?

The answer to this question depends upon whether the IV Ig or ACTH (acthar gel) is being used to treat an acute relapse, to reduce the chance of future relapses in patients with relapsing remitting multiple sclerosis or to prevent the accumulation of disability in any patient, particularly progressive patients:

Treatment of Acute Relapses:
  1. ACTH was actually the first drug approved specifically to hasten recovery from MS relapses. It does not require an infusion and is generally as well tolerated as IV methylprednisolone (Solumedrol). There is no class I evidence to suggest one is better than the other at treating acute relapses. ACT is very expensive and there may be problems getting insurance to cover the treatment.
  2. The evidence to support IV Ig for the treatment of acute relapses is probably class III (minimal). There are few well designed studies for this indication although it remains a popular treatment for MS relapses in the Pediatric population. It is primarily used to treat relapses in patients totally unable to tolerate corticosteroids or with a contraindication to corticosteroid usage. When a single dose of IV Ig is given with a regular three day course of IV methylprednisolone for acute relapses, it does not appear to add any benefit to the steroid treatment. It is sometimes used in patients who continue to worsen over 2 weeks despite treatment with high dose methylprednisolone, although plasma exchange is the preferred treatment for this scenario. Again, this is a very expensive treatment costing more than $5,000 per infusion and usually given for 3 to 5 days to treat a relapse.

Prevention of relapses in patients currently stable:
  1. There is no good evidence to support the use of ACTH for this indication. Even though some neurologists prescribe regular injections of ACTH to manage MS symptoms, the use of regular injections (weekly, every two weeks or monthly) must be weighted against to the costs and potential long term side effects.
  2. IV Ig has been shown to reduce the risk of relapses when given regularly, usually 400 mg/kg, once monthly. Due to cost, modest benefits and the availability of other agents ,this is usually not a first line treatment of relapsing MS. It has been shown to reduce the risk of postpartum relapses in one study where woman took IV Ig for 5 consecutive days in the first week after delivery and then in a single dose given 6 and 12 weeks later. This is a reasonable indication particularly in those women with a high risk of post partum relapse.

Prevention of the accumulation of disability in relapsing or progressive MS:
  • ACTH has never been tested for this indication
  • Although slightly controversial in some quarters, IV Ig does not appear to be beneficial as mono therapy for this indication. Whether it would be beneficial in combination with other treatments is unknown.

Are the Steroids Working or Not? 

1/10/2014

 
Q.  How can you tell if steroids are or aren't helping a particular flare? For example, if steroids are given very soon after the symptom onset, and if symptoms keep on getting worse for another 10 days after the last day of steroid admission, and then take a month to (more or less) go away, would you that steroids worked or not?

A.  Very good question and hard to give an answer that is true in all circumstances. Generally, steroids start working within the first week if not the first few days. A person still worsening 10 days after starting steroids is probably not responding, even though we usually use the two week cutoff to define a non-responder. In the example given it is more likely that the improvement was spontaneous. After all, we do call this phase of the disease relapsing remitting for a reason.

--Dr. Kinkel


Clinical Trials -- MS and Diet

1/9/2014

 
Here is a comment we recently received:

"
It seems a gluten/diary-free diet has some effect on my energy level. It is very difficult in this society to keep this sort of diet, but this and the "paleo" diet seem to be helpful. Not for symptoms like mobility issues or incontinence, but energy and sleeping. I would like to have more information about this and how it works and any studies being done about MS and diet."

The following link is a search of all current studies listing at the Federal Government Clinical Trials registration site assessing diet in Multiple Sclerosis. I believe the only study recruiting patients is at the University of Iowa testing both Gluten free and paleo diets.

We do not know how these diets work or if it is just a placebo effect but many people with MS report improved energy and well being.

http://clinicaltrials.gov/ct2/results?term=Diet+and+Multiple+sclerosis&pg=1

--Dr. Kinkel

How Can Worsening Symptoms NOT be Related to MS?

1/8/2014

 
It is very rare to go through life with MS as your only medical problem. Often new or worsening symptoms are either directly or indirectly related to another condition. For instance, if you experience a urinary tract infection that you are not aware of (not an uncommon event), many of your usual MS symptoms can worsen until the infection is treated. Other symptoms, such as fatigue and forgetfulness, can be totally unrelated or indirectly related to MS; in fact depression and sleep disruption are two of the most common causes of these symptoms.

Lastly, even if new symptoms are emerging or worsening directly as a result of your MS, it doesn't mean the MS is getting worse. Some symptoms seem to emerge more commonly during the recovery phase of relapses and would indicate attempts at regeneration or scaring.

This is why you need the help of an experienced MS specialist to sort out these issues and help you find the appropriate treatment. These are complex issues and even a skilled MS specialist will often find it difficult to determine at first to determine if your worsening symptoms are directly attributable to your MS. However, the cause usually becomes apparent over time. I hope this information helps.


--Dr Kinkel


I'll Drink to This...

1/7/2014

 
Drinking alcohol appears to have a dose-dependent inverse (opposite) association with the risk of developing multiple sclerosis (MS) and researchers suggest their findings give no support to advising patients with MS to completely refrain from alcohol (see link below).

http://media.jamanetwork.com/news-item/inverse-association-between-alcohol-consumption-multiple-sclerosis/


Numerous studies have indicated the health benefits of moderate alcohol consumption and this study is consistent with these prior studies. However, moderate alcohol consumption is not in the eye of the beholder; consuming greater than one drink a night on a regular basis can lead to other problems. Furthermore, MS patients often find that consuming alcohol can increase their MS symptoms in an unpleasant way. So find your own tolerance level for drinking and do not drink to excess.

--Dr. Kinkel


Self Efficacy and Multiple Sclerosis

1/7/2014

 
We have discussed the individual steps that must be taken to achieve your desired health outcomes but have yet to discuss the most important issue; how do you actually do it?  It is easy for me to tell you to stop smoking, exercise, eat well, lose weight, and take your medications but why is it so difficult to accomplish these goals and why do so many people give up? Perhaps the best model to explain the success or failure of these human activities was developed by Albert Bandura at Stanford. According to his model, the success of any human endeavor requires a perceived belief that an action will achieve an outcome (i.e. stopping smoking will make me happier and healthier) and the sustained belief that you are capable of carrying out this action. This is collectively referred to as self-efficacy.

To quote Dr Bandara,

A strong sense of efficacy enhances human accomplishment and personal well being in many ways. People with high assurance in their capabilities approach difficult tasks as challenges to be mastered rather than as threats to be avoided. Such an efficacious outlook fosters intrinsic interest and deep engrossment in activities. They set themselves challenging goals and maintain strong commitment to them. They heighten and sustain their efforts in the face of failure. They quickly recover their sense of efficacy after failures and setbacks. They attribute failure to insufficient effort or deficient knowledge and skills, which are acquirable. They approach threatening situations with assurance that they can exercise control over them. Such an efficacious outlook produces personal accomplishments, reduces stress and lowers vulnerability to depression.

In contrast, people who doubt their capabililities shy away from difficulty tasks which they view as personal threats. They have low aspirations and weak commitment to the goals they choose to pursue. When faced with difficult tasks, they dwell on their personal deficiencies, on obstacles they will encounter, and all kinds of adverse outcomes rather than concentrate on how to perform successfully. They slacken their efforts and give up quickly in the face of difficulties. They are slow to recover their sense of efficacy following failure or setbacks. Because they view insufficient performance as deficient aptitude it does not require much failure for them to lose faith in their capabilities. They fall easy victim to stress and depression.


I face both sets of problems in my own life and in my attempts to help people with their health; first, I must deal with my own skepticism with regard to many treatments, particularly those that are untested, as well as the skepticism of patients regarding medical advice.  For instance, there are people who do not believe any of the drugs approved by the FDA will help their MS. While this is certainly an extreme example, I see many more people with smaller yet significant doubts regarding my medical recommendations. These doubts have persistent and enduring affects on their health outcomes. Perhaps the patient fails to take their medication regularly since they are not totally convinced it will help. Similarly, a person less committed to a treatment will give up on it whenever an event or a piece of information arises that serves to reinforce this opinion. Often this information is totally bogus but this makes little difference since it reinforces a preconceived notion. In all these cases it will not be possible for me to affect a desired outcome unless I can learn why the patient is only partially committed to my recommendation.  

The second problem, the perception of being incapable of accomplishing a goal, is far more pervasive and often reinforced unknowingly by those around us.

Thankfully, self-efficacy is not a built-in personality trait. This is something that varies from experience to experience; some people have high levels of self-efficacy for some activities and lower levels for others.  

So how do you improve self-efficacy? There are generally four ways to do this:

  1. Build on your past successes: These successes did not come easily and would never have occur unless you learned to overcome obstacles and failures.  Use this knowledge to help you now.
  2. Seek out positive role models: Find someone who has had to overcome similar obstacles. This is the reason why support groups and blogs are so popular.
  3. Develop a strong social support network; it is hard to quit smoking when everyone around you smokes. Seek out non-smokers if you want to be successful
  4. Reduce stress reactions: To do this you must alter your tendency to negative emotional states and misinterpretation of your physical symptoms as harmful. A person who tells me exercise makes them too tired or sore is a classic example.  Do not misinterpret these symptoms as harmful or a reason to stop. Similarly do not interpret your heart racing or your anxiety over an injection as a sign that taking the medication is harmful. Use this to facilitate performance not limit activities. Do not let these physical stress reactions become debilitating and give up.

Working with your health network (i.e. doctors, other health professionals, family and friends) to improve your self efficacy is the number one thing you can do to improve your health and is the foundation upon which rests all actions and behaviors to improve outcomes in people with chronic conditions.  Whenever you see yourself faltering in a recommended or required behavior, begin by asking what are you doing wrong and how can you solve it. Take responsibility and find help if required. Do not give in to self-doubts and self pity; accept set backs as a learning experience, correct your behavior and move on without regret and without looking back. If you are persistent you will achieve your goals.

PLEASE NOTE:  The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician 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.

Why Stay on Therapy if MS Symptoms are Worsening?

1/6/2014

 
Q.  I been on Tysabri for a year with worsening symptoms but still my Neuro wants me to be on it for another year. I asked why and he said it is best for my type of MS.  Does it take that long to see improvement?

A.  My response is somewhat complicated but bare with me for a second and I think you will understand. First, Tysabri may not improve your symptoms, even if it is totally controlling your MS. The reason is that symptoms are complex and mostly caused by prior injury in your brain and spinal cord. Since none of the treatments repair your nervous system, it is sometimes unreasonable to expect an improvement in symptoms.

Now you also mention that your symptoms are getting worse while on Tysabri. Worsening symptoms can be related to your MS getting worse or can be totally unrelated. It is up to your MS specialist to figure this out for you. I suspect your MS specialist has not observed any changes on your examination or your MRI scan since you started Tysabri and this is why he or she is recommending your continue treatment. However, it will also be important for your doctor to address and treat the symptoms that are bothering you.

Why not ask for a visit to only discuss what is causing these symptoms and how to treat them. Do not bring up any other issues or concerns during this visit so that the problem gets addressed adequately.

Hope this helps.

--Dr. Kinkel

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    PLEASE NOTE: This information/opinions on this site should be used as an information source 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.
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