Why MS Doesn’t Scare Me Anymore

“Overcoming Fear”

January 11, 2015

Fear can be paralyzing. It interferes or overtakes one’s thoughts and actions. Fear causes immense stress. People with MS are confronted with it before, during and after diagnosis constantly. After all, there is no cure for MS, no two cases are alike, and it is highly unpredictable in its course.

To make matters worse, fear is intensified by what is read or said by others, health professionals and social media. The fear of ending up in a wheelchair or becoming very mobility impaired; the fear of losing cognitive abilities, the fear of losing employment or becoming incapacitated….

Even MS Associations who try to portray MS in a positive light often unintentionally create fear due to their messages of “get on a treatment ASAP” or “you need to call your doctor…” Lately, all of the emphasis on cognitive issues causes misconceptions that losing one’s mental faculties is inevitable; or a memory problem such as brain fog is due to MS.

I lived with that fear of the unknown, and with the thoughts of the many “what-if scenarios.” After my first ten years of living with MS, I didn’t fear it anymore; and I still don’t.

Why not?

• As time went, I realized that the more knowledge and experience I gained, the less fear I had. I got to know my body relative to my own MS patterns and responses, adjusted my lifestyle, and learned how to manage both my MS and my personal life. I felt more in control of my MS; the more control I acquired, the less fear I had. Yes—MS is a manageable disease.

The most common triggers of MS symptoms are stress, fatigue, and temperature/weather changes. Learning how to manage these triggers usually settle the symptoms down and prevent a relapse. By not managing them, they will become chronic which will lead to a flare/relapse.

• Research taught me that statistics were on my side. Here are some major fears, with research to show that they are not as bad as many think:

**It is estimated that 40-50% of people with MS experience mild to moderate impairment; severe cognitive decline like dementia are extremely rare (source: MSIF.org). Check out this MS post—“Are Cognitive Problems Blamed Too Much on MS?”

** Over a lifetime, only 20-25% end up confined to a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.” Check out this post “The Truth about MS and Wheelchairs”

**There are more benign cases of MS than publicized. For example, a current starting point is to get specific data on DMT’s from reliable sources. On Page 13 of “The Use of Disease-Modifying Therapies in MS: Principles and Current Evidence” (The MS Coalition– http://bit.ly/1oEnTqY ), the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS) 6 and 23% had converted to SPMS.
Read closely, and always double-check hear-say. Another post to read–“Where and how to get your information.”

• Reaching out and accepting support from family, friends and the MS community helps immensely in minimizing stress. My physical, mental and emotional states were significantly improved. I wasn’t alone. Those that really want to help—let them and tell them how.

• Having a focus on overall wellness and health is a priority. When one feels better physically, one will also feel better emotionally and mentally. It is common sense but it’s amazing how many people lose sight of this. In addition, I take all measures to prevent flus, colds, sickness and injuries. These will lead to relapses, thus frequently resulting in MS progression.

• The advancements in research for treatments and a cure have been increasing exponentially. It WILL happen in your lifetime.

• The brain is a powerful organ, and it is gratifying that brain health is finally being addressed. The brain CAN be retrained and repair itself to a certain degree. I had symptoms for years that I no longer have.

I’m an ol’ MS vet, and there are many of us out there. We are folks who have lived and survived MS well for decades, and most would agree with what I just wrote. We know, and we are a positive group. And more positivity will also reduce fear.

It took me ten years to get over my fear of having MS; nowadays, that span of time should be much shorter. After all, it was still the dark ages for both MS and me between 1980 and 1990. Times have changed.

www.DebbieMS.com
Author, MS Counselor, Living with MS

MS: Disease Modifying Drug Therapies

“Questions and Concerns”

April 5, 2013

On March 27, a news article stated “The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS.”

This is the tenth DMD (Disease Modifying Drug) that has been approved by the FDA to reduce the progression and activity of the disease. It is also the third DMD approved in the past two years that can be taken orally in lieu of an injection, exciting many persons who have MS.

The National MS Society and most neurologists, are strong proponents of these DMD’s, and recommend starting one as soon as a diagnosis is made. “Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration,” states an article on the internet front page of the National MS Society today.

Is it the best course of action to take for everyone? Here is a list of questions/concerns to think about when deciding whether to use a disease modifying drug:

1. Is it wise to start a treatment that was just FDA approved (or just approved in the past couple of years), without knowing the long-term side effects?

• None of the DMD’s decrease the relapses 100%; most decrease them in the 28-68% range. Is this enough to justify the possible long-term effects of possible liver, kidney or heart damage? Built up resistance? Other serious health implications? What if the person is only a teen or very young and has decades of life ahead of them?

• The biggest fear of having MS is the loss of mobility, although there are numerous other symptoms of MS that are disturbing. This fear is exemplified by slogans, ads, pictures and more. Yet, for years the statistics estimated that 25% of MS patients end up using a wheelchair during their life. After living with MS for 32 years, I am one of those people in a wheelchair. Maybe this sounds stupid to someone, but I personally feel that I would rather manage living in a wheelchair than with a damaged liver.

• What happens if the DMD is found to not work after all? News came last July that an extensive study suggests interferons, the basis for many DMD’s, did not reduce MS progression. This news was alarming. “Can this be true?–after all those years of injections, tests, office visits, side effects, dollars spent….” were comments expressed in social media.

Within the above-mentioned article, Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Advisory Committee states “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time.” Hmmm—does this comment concern you?

2. Does the decreased rate of 28-68% of possible reduced relapses warrant the short-term side effects and other things people experience with DMD treatment?

• Yes, treatments do have side effects, and again they vary widely for each individual. Nausea, flu-type symptoms, dizziness, site-injection soreness and fatigue are some but not all common complaints. One has to ask and decide for him/herself if the treatment is worth it; for example, feeling like you have the flu 1-2 days a week after an injection. Or putting it another way, which is the lesser of two evils? In addition, I hear and read so often in social media about how frequently MSers change their DMD because of the side effects, or that it is not working in slowing the progression.

• DMD’s require much monitoring–doctor visits, MRI’s, clinic visits… The therapy adds more cost, are time-consuming and exhausting. Fatigue—a very disabling symptom 90% of MSers experience—is compounded.

• Taking a DMD is a difficult regime. It adds physical, emotional and mental stress on the body. These could lead to depression, and more fatigue. It is possible that the stress of taking a DMD could nullify any possible benefit of it for some people.

• Treatments are expensive. The price tag on this new treatment is $55-60,000! While some patients get financial assistance through the drug companies or being a clinical trial participant, many others pay thousands of dollars annually out-of-pocket. I’m becoming quite cynical of pharmaceutical companies when I see their expensive ads, exhibits and give-aways at events.

3. Should a newly-diagnosed person start a treatment without first evaluating how aggressive or mild their disease course is?

• Up until 1996, a type of MS included a “benign” course. Up to 20% of MS patients had this type of relapsing-remitting, in which few relapses occurred that would go away and leave very little or no residual damage or disability. Symptoms were primarily sensory, but could include others such as motor or bladder disturbances. The term is no longer used, and this type is now included with the relapsing remitting type.

The point is that many persons diagnosed with MS could have a mild case, and how would they know if they started a treatment immediately after diagnosis? In addition, a newly-diagnosed person is usually quite stressed and often prescribed other drugs to relieve symptoms or the relapse. The waters become muddy in knowing what is causing what, positively or negatively, when everything is happening at the same time.

• A newly-diagnosed person should take notes and keep a journal about their symptoms, reactions to any drugs given for a symptom or a relapse, etc. to learn about their own case of MS. Delaying a treatment of several months will make little difference in the overall course of the MS. Not taking care of oneself, feeling pressured by doctors/others, and chronic stress can affect the MS as much as not taking a DMD.

• Meantime, research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc. Use common sense, and remember that this is your body and ultimately your personal decision.

4. To expand on #3 above, has both the doctor and the person with MS evaluated his/her course for a reasonable period of time before starting a DMD?

• Each person with MS has a different course of progression, relapses and symptoms. No two cases are alike. Patterns of these factors will emerge after awhile. What are the frequency, severity, duration and residual of a relapse? Is the relapse being defined properly? MS is sensitive to many things, and several days or even a week of intensified symptoms does not necessarily indicate a relapse.

• The number and location of lesions being used as the sole indicator of disease progression can be leading. New and old lesions cannot always be distinguished and lesions showing on one MRI may not appear on the next one.

5. Do doctors honestly know if a slowing of progression is from a DMD? Couldn’t less lesions result from the natural course of the disease itself or any health/wellness program a patient is following?

• The truth is, DMD’s are difficult to monitor accurately. And it is worthwhile to note that DMD’s are not meant to make a person feel better.

6. Why isn’t there more emphasis on managing MS from a non-medicinal standpoint? Why are drugs pushed as the first line of defense?

• Since there currently is no cure for MS, the objective is to reduce the amount and severity of relapses to prevent further damage to the central nervous system until a cure is found. It is common sense that a comprehensive therapeutic approach should be taken to treat MS.

• There is no single drug to make MS go away. While drugs play an important role in helping symptoms, relapses and the course of MS, there are so many non-medicinal things a person can do to both manage and control it as well without side effects. Examples include:

– Taking care of oneself with proper diet, exercise, sleep, low stress…
– Not getting sick or infections since MS is an autoimmune disorder.
– Alternative therapies, such as Yoga, Pilates, Tai Chi, massage…

There are many MSers who use this approach successfully to manage their MS, while taking drugs for symptom relief or relapse treatment (corticosteroids) as needed.

Sure, I want a cure or an effective treatment just as much as the next person, but I have always weighed my options carefully. I’m only 57 and I have many of years ahead of me. So I have to make sure I do my research and ask questions in order to make the right choices. Shouldn’t everyone?

www.DebbieMS.com

Serious Effects of Getting Sick for MS/Autoimmune Disease Patients

The season of colds, flus and viruses is upon us. For normal people, getting one of these is no fun, but they soon get well and life goes on. For those of us with multiple sclerosis, an autoimmune disease, these sicknesses are detrimental to our overall health.
What to Know

1. When a person with an autoimmune disease gets sick, those fighter T-cells from the immune system get to work to combat the invading bacteria or virus. Unfortunately those cells goof up on the job and attack the body instead of the real villains. For multiple sclerosis, the central nervous system is attacked; for patients of rheumatoid arthritis, the joints are attacked; for lupus, the body’s organs are attacked, and so forth.

For a person with MS, the attack means that inflammation in the nervous system will likely occur, causing present MS symptoms to worsen and perhaps causing new symptoms to appear. The probability of a relapse is high, often followed by residual damage to one or more areas of the CNS.

To make matters worse, because the immune system isn’t working properly, recovery time is extended. A normal person may recover from a cold in five days; recovery for a person with MS or an autoimmune disease may take up to ten days or even longer.

2. Drugs taken to treat MS relapses have a dual purpose: to suppress the immune system to avoid releasing the T-fighter cells and to reduce the inflammation that an attack ultimately causes. During an MS relapse, steroids (Solu-medrol, predisone…) are usually prescribed in high doses to quickly remedy these two problems. The downside to these benefits is that the person is left highly vulnerable to getting sick or infected because the immune system is suppressed.

Another example is an MS treatment available called Acthar. It is an option to treat MS relapses and inflammation differently from steroids; however, like steroids it suppresses the immune system and increases the chances of getting infections and illnesses.

3. Depression, anxiety and fatigue are common symptoms of MS and other diseases/chronic illnesses. Sickness and infections exacerbate these symptoms. As the winter season drags on, these symptoms are often affected even more. A rolling stone gathers moss…

What to Do

1. Take all measures to keep your resistance high and your exposure to infections, colds and viruses low:

• Make sure to get a good night sleep, eat properly, and drink plenty of water to keep the body healthy.  Take vitamins, especially the B’s to boost the immune system.

• Constantly wash hands, don’t share food or drinks, and never put fingers in the mouth, nose or eyes. Take hand sanitizer with you and use it often, such as in a bathroom, after reading magazines or shaking hands with someone. Avoid rubbing your eyes, sharing food, or putting things in your mouth, like a pen. Take your own bottle of water in lieu of drinking from a water fountain.

• Stay away from people with colds or viruses. If someone who wants to get together with you is sick, suggest having a phone chat instead. When it is someone you live or work with, keep your distance from them as much as possible. Put kisses and hugs on hold, and then double up on them when the sickness passes. Teach kids to wash their hands, use the chicken-wing when sneezing, and all of the things listed above.

2. With regard to flu shots, it should be a personal decision regardless of what doctors or researchers advise about shots. Many people choose to use commonsense methods to avoid the flu and don’t want the risk of any side effects from annually developed vaccines on what the ‘new’ strains are expected to be.

3. Check the inserts that come with your medications to learn whether they can effect the immune system.

4. If you have an infection (e.g. sinus), call your doctor for an antibiotic.

5. If you have a virus, try to hang in there and tolerate the MS symptoms until the sickness is over (even if it is causing a relapse/flare-up).

• Again, recovery from a sickness for a MSer is usually longer because of the immune system dysfunction. The waiting can be a real burden on our patience, adding stress. Getting on steroids while ill can cause a longer recovery period while leaving you exposed to getting something else.

• Take extra steps to rest, take care yourself, build the resistance up, and try to recover on your own.

• If you can’t hang in there, consult with your doctor about a course of action. While colds, flus and viruses cannot be treated with antibiotics, the symptoms of these sicknesses can be treated for comfort (example: a decongestant or cough suppressant).

6. If the cold/sickness is over and the MS symptoms stay intensified afterwards, then call the doctor to discuss steroids because at this point the MS is probably active.

7. Remember that heat has an adverse effect on many people living with MS. Having a fever that frequently accompanies a virus or flu can significantly intensify MS symptoms. Treat a fever with aspirin or ibuprofen, cool packs, and plenty of water/ice chips to reduce some of the negative impact the sickness is having on your symptoms.

8. Fight the winter doldrums by finding ways to overcome depression and anxiety. Rest often to help with fatigue.

While those suffering from MS or another chronic illness do not have control all of the time, there are things that can be done to have control some of the time. This is one of those times we can help take control.

www.DebbieMS.com
Author/MS Counselor/Living with MS

MS Treatments

“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com