Here is My Question:
Does exercise help stop MS disabilities?

Answer #1
Great question and thank you! Disability as a result of MS is due to the disease itself. A properly designed exercise program, while not stopping the disability per se, will allow you to overcome the severity and impact of your disability. I myself have MS, and it has impacted my lower body mobilities. It is critical that an exercise regimen includes strengthening not only the affected muscle group(s), but the entire body as well, including your heart AND lungs. 

Daryl Kucera
Certified personal trainer and young sports conditioning coach
Founder and owner of the MS Forward fitness gym in Omaha, NE. 

Answer #2
Exercise and progressive resistance training are the only modalities known to improve function in the majority of MS patients. Some drugs like Ampyra, can improve function in about 50% of patients, but the benefits are greater when combined when combined with an exercise and progressive resistance training program.

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

Question:
I am not on any disease modifying medications and this concerns me. I was diagnosed 3 years ago at age 55. I have had 3 opinions of my type of MS. 1. Benign or quiet MS from my hometown neurologist 2. Primary Progressive MS from the Harper Medical Center in Detroit and 3. No label from Cleveland Clinic. I have had 4 MRI's and there is no change from the initial findings of 4 lesions in brain and 2 in my cervical spine. I feel that my symptoms are progressing. My gait seems to be off and I experience numbness, involuntary toe movements and sensations in limbs. I have fallen a couple times from my leg giving out. Should I be concerned that I am not on any medications?

Answer:
If you think about it, it makes no difference which MS specialist was correct about your disease type. Although I suspect that your condition is hardly benign by your description, in all of the disease types described there is no evidence that standard disease modifying therapies for MS are beneficial.

But this does not mean there is not a lot more that can be done to help you! I would return to one of your MS specialists and tell them about your symptoms and your falling. Ask them what symptomatic and rehabilitation therapies can be used to improve your symptoms and maximize function. Remember, the only treatments demonstrated to improve function in MS patients is resistance training and aerobic exercise programs. You just may need some help getting started.

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 the options for someone with primary progressive MS? I am 66 and was diagnosed after a spinal tap in 2008; am physically active (downhill ski, but less aggressively and at my own pace); have no visual changes due to MS; have some areas of cognitive impairment (mild) but other areas are very superior. My neurologist says that there is no treatment and the neuro-psychologist said to do activities like crossword puzzles or study a foreign language. I am satisfied with my physical status, but would like to limit my cognitive decline as much as I can.

Answer:
Please see Dr. Kinkel's excellent blog post on cognition and MS (posted 7/22/2014) READ MORE

In addition, I would add that as we age, all can succumb to common problems that affect cognition.  In this case, we can't assume that cognitive problems are solely due to MS (if at all).  Your neurologist can help screen for other causes of cognitive dysfunction with the help of a neuropsychologist (which it appears you have already met).  

What we have learned is that medical conditions that can affect blood vessels (ie, "vascular disease") such as high blood pressure, high cholesterol, blood sugar regulation problems, smoking, etc can encourage disease progression and affect cognition and also cause "little white dots" on the brain scan as well.  These problems are more prevalent as we age.  Moreover, the litany of other ailments that Dr. Kinkel lists in his blog post which contribute to cognitive problems are also more common as we age and should be taken into consideration when trying to tease apart potential reasons for your symptoms.

I do not have much more to add to what you are doing or what has been said in the aforementioned blog post.  I would just emphasize the need to remain physically healthy to try and mitigate the other potential causes of cognitive difficulty.  Specifically, work on aerobic exercise (with a goal of 30 minutes of continuous exercise a day, for 5 days a week), a balanced/healthy diet, and adequate and restorative sleep.  Of course, consult with your doctors about the type and intensity of aerobic exercise that is appropriate for you.

I would also add one last thing...Dr. Kinkel suggests in his blog that our disease modifying therapies very well may mitigate cognitive dysfunction over time.  I agree.  I would also point out that our approach to treatment of MS is shifting.  The term "primary progressive MS" is becoming a relic with alternative terms such as "active and/or progressive" as descriptors to a patient's MS activity.  Reason for this is that even the "primary progressive" patients can have inflammatory disease activity (even if not recognized clinically or symptomatically) noted on the MRI scans.  If this is the case, even a patient with the label of "primary progressive MS" could qualify for a disease modifying therapy because they are demonstrating "active" or "inflammatory" disease activity that likely will respond to an MS therapy (and could impact cognitive decline).  I'm am not advocating for frequent/routine MRI scanning of progressive MS patients, but under the right circumstances (ie, worsening cognition), it should be considered.

-ASN

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:
I was diagnosed with RRMS in 2001. Was recently taken off Copaxone because it seemed to have stopped helping. I have daily symptoms...never-ending. My question is about fatigue. Do most patients feel the extreme fatigue with activity? Simple things like washing a dish, brushing teeth, bending over or carrying groceries can wipe me out and even make me a little lightheaded. I notice I sleep more during the day, but I force myself to keep going. I've had all the cardiac tests which seem to be normal for my age (63). But I just can't seem to do much physical work anymore. I tried PT and water aerobics. The exercise makes things worse. I also have Graves, IBS, Gastritis, osteoarthritis and tendinitis. Also degenerative disc problems. Thanks so much. Appreciate any advice or suggestions.

Answer:
Your experience with fatigue is common among MS patients. Thankfully, we have lots of information on this site to help with the management of MS related fatigue. Just use the search feature to find the information. However, before you begin your search for answers remember the following: There is no single solution to fatigue; trying something like an exercise program, deciding that it is not helpful and discarding it is a mistake. Most of these strategies will require months of hard work and adjustments to find a successful solution. These solutions always require a combination of management strategies that include most of the following:

• An aerobic exercise program that gradually increases over time
• Adjustment or discontinuation of medications that may be worsening your fatigue 
• Judicious cooling
• Activity adjustments during the day
• Dietary modification as required
• Improved sleep hygiene as required
• Judicious use of medications prescribed by your MS doctor to treat fatigue and exertional weakness; these include amantadine, modafinil and 4 amino pyridine (Ampyra) to name a few
  

You should discuss the comprehensive management of your MS related fatigue with your MS team

Rip Kinkel

Here is My Question:
I have been diagnosed with MS and have lost bladder control and the ability to achieve erections. Can I get back bladder control and erections through kegel exercises without medication?

Answer:
Kegel exercises strengthen pelvic floor muscles in men and women to help improve control of urination and there are some who believe the exercises may improve erections in men. Without knowing the details of your case, it is hard for me to know if Kegel exercises will help, but they certainly can’t hurt. I suspect that you, like most people with MS, need to do Kegel exercises to strengthen your pelvic floor muscles as much as possible and judiciously use appropriate medical therapy for these problems. You can find instructions for learning to do Kegel exercises on this web site CLICK HERE. If you can not learn to do Kegel exercises, discuss this further with your MS specialist or urologist.

Rip Kinkel

Question:  I am continuing to lose muscle mass in my legs in spite of physical therapy specifically addressing this area. Do you know of any supplement such as creatine that would help build it back up or protect from further loss?

Answer:  Sustaining or increasing muscle mass requires normal innervation of muscle by the nerves supplying them and the repeated activation of the muscle that occurs with everyday activity and muscle strengthening programs. Supplements will not help activate muscles but resistance training programs or electrical stimulation may help activate muscles enough to increase muscle mass. Please discuss this further with your doctor or physical therapist.

I hate to sound like a broken record or an advertisement, but I’ve recommended the Nintendo Wii Fit system for years. Although not an 'app', the most recent versions have programs for Balance, Strength training, Yoga, Aerobics and now something called training plus.

This is a great system that helps you set goals and track your response. It is also fun and best performed as a social activity with family members. Ask your physician or physical therapist about it.

-Dr. Kinkel