Tag Archives: MS relapses/attacks

MS: Health and Wellness

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“Critical for MS Management and Control”

It’s the new buzz phrase for multiple sclerosis. And it’s about time it’s getting attention.

But will it get the proper messages and info out about what MS “Health and Wellness” actually is? I’ve seen the words “Diet” “Exercise” and “Emotions” as the main categories for the new Health and Wellness strategy for helping to manage MS. But there are a lot of sub-categories under each of these groups, and there is much more to Health and Wellness than just these groups.

I wrote my book three years ago (Managing MS: Straight Talk…) and listed “My Ten Commandments” as my primary way of handling my MS. Guess what? It’s about the health and wellness ways I follow to not only manage my MS, but also to control the progression of it.

t’s the other side of that coin for MS management strategies—non-medicinal vs. medicinal. A side that has been neglected or not addressed for years.

Here’s the goal for MSers: Until a cure is discovered, or restorative abilities to damaged areas are found, it is paramount that a person with MS lives with their primary goal to prevent as much damage to the nervous system as possible.

HOW DO WE DO THAT?

We know that MS is an autoimmune disease, and when our body is under attack by something like sickness, infection, physical or emotional injury, etc., our immune system’s army of fighter cells screw up on their job and attack our brain, spinal cord, and optic nerves instead of the foreign invaders. Attacks lead to inflammation, relapses, lesions, damage and so on.

• Major attention has to focus on keeping our immune system CALM. Good, conscientious health and wellness will keep the body’s resistance strong against those culprits that trigger activation of the immune system. Develop habits to prevent sickness, infection, injury and chronic stress. For circumstances beyond our control (e.g. a death, a catastrophe…) reach out to get as much help and support as possible.

There are many dimensions of health/wellness that include but are not limited to:

**Physical Wellness: such as sleeping, eating, and exercising properly; watching your   weight; avoiding the use of tobacco, drugs, and excessive alcohol consumption.

**Social Wellness: having healthy, positive interpersonal relationships with family, friends, pets and others.

**Spiritual Wellness: finding meaning and purpose in life. This may or may not include religion.

**Emotional Wellness: understanding our feelings and emotions and knowing action plans to follow when needed

**Intellectual Wellness: maintaining cognitive stimulation to prevent mental stagnation. It is a lifelong process of mental challenges and creativity.

• All DMTs (Disease Modifying Treatments) work by suppressing, or altering, the activity of the immune system. These therapies are based on the theory that MS is, at least in part, a result of an abnormal response of the body’s immune system that causes it to attack the myelin surrounding nerves. Corticosteroids used to treat relapses also suppress the immune system.

What does this mean? When the immune system is suppressed, the body is more susceptible to infections and illness, and thus relapses. Therefore, it is imperative that all good health and wellness habits be followed. For example, if you take Solumedrol, avoid people with colds and viruses. At the first sign of a UTI infection, get on an antibiotic. You can take care of your health so that your immune system isn’t ‘triggered’ to act due to illness, etc.

• One must think of health and wellness both in the short and long term. After all, there is no cure yet and nobody knows if/when that will happen. We have one body, and we need to protect it, be proactive, and make prudent choices. For example, every drug that is taken has to be processed through the liver; what are the risks vs. benefits of any drug we take regularly after 10, 20, 30 or 40 years?

Everyone has their own stories and experiences with MS. Here’s mine:

In 1980 when my first major attack happened, I was only 25. Since there was scant literature about MS, it took a awhile to understand the disease and figure out what to do. I finally learned proper health and wellness for MS that I followed for decades and am still learning as new things emerge.

Flash forward 34 years. I just turned sixty. I never took a DMT, had only two MRI’s, quit smoking in 1987 and having been swimming 3x/week for thirty years. I weigh 115 lbs., and have perfect scores on all my tests: blood pressure, cholesterol, pulse, circulation, Vitamin D and all the other things that are measured when blood is checked. Although I have been self-cathing for 28 years, both my bladder and kidneys are as good as a “normal” person’s due to good neurogenic bladder management. Meds are taken for spasticity, depression, and bladder regularly, and for sleeping/anxiety as needed. I practice yoga, deep breathing and stretching for pain and stress. Tutoring Spanish for years and reading/researching technical data surely help my cognitive function.

Yes, I am the one in four who ended up in a wheelchair, but the strength and agility in my upper body and trunk enable me to do many things independently, including driving.

Is it easy? Quite frankly, no. It takes a tremendous amount of discipline, determination, and control. And now that I am starting my seventh decade of life, I am slowing down.

But I know two things. First, if I didn’t practice good health and wellness, my MS would be so much worse. Second, if/when that breakthrough for remyelination or a cure arrives, I’m in great shape for it.

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

 

*Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

 

 

 

Where and How to get Your MS Information

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                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better. I told them that the medications are to keep from getting worse and not to make one better.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, 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)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

(Sources)
#1 The NPR Diane Rehm Show (9/24/2012) aired “Diagnosing, Treating and Living with MS.” A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

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

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

MS Blogs

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January 12, 2014

I am proud to announce that my MS Blog was selected for Neurology Now Magazine’s list of Patient Bloggers! http://journals.lww.com/neurologynow/Fulltext/2013/09060/Neurology_News__Having_Their_Say___Patient.16.aspx

Neurology Now Magazine:
December/January 2013 – Volume 9 – Issue 6 – p 14

Neurology News: Having Their Say: Patient Bloggers

“While your doctors can give you information and guidance about your condition, they’re not always the best source for practical advice. Patient bloggers offer that in spades as they chronicle their own journey with neurologic disease—sometimes funny, sometimes painful, but above all else, familiar. We tried to find blogs that are well-written, honest, and responsible in the way they handle medical information.”

Neurology Now is sponsored by the American Academy of Neurology and the American Brain Foundation. Free for subscribers, information is provided about various neurological problems in their publications. Included in each of their issues are also stories written about individuals—both well-known and unknown—who are dealing with a disorder/disease successfully. Here is a link to check it out http://patients.aan.com/index.cfm?axon=redirect&&path=/go/neurologynow  .

Also check out my 57 articles within this blog at the bottom of this blog page, as well as my website that contains much info about multiple sclerosis www.DebbieMS.com .

Best-

Debbie
Managing MS, Straight Talk…

Prednisone & Corticosteroids: Helpful Tips

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“What doctors/pharmacists don’t tell you.”

January 3, 2014

It is amazing how frequently the subject of steroids comes up. Just in the last two weeks, three people told me they were on prednisone and they were all irritable about the side effects. One was taking them for sinus problems; another was taking prednisone for arthritis. The third was taking them for an MS flare-up.

They are powerful drugs and are prescribed often for people with and without MS. Why? Because their primary purpose is to reduce inflammation. And inflammation occurs in all parts of the body, and these drugs do help.

But there is much to know about steroids, and unfortunately, the doctor and the pharmacist never tells it all. The first experience with steroids is horrifying to say the least, and creates tremendous confusion and stress. I personally hated them in the beginning, but after I understood my own body’s reactions and the fact that they did work for me, steroids became my friend.

For folks with MS, corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). Solu-Medrol is given intravenously for 3-5 days usually at home (about 1-2 hours per day). Prednisone is given orally usually over a 10-14 day period, beginning with a very high dosage (e.g. 80mg/day works for me) and tapering down the last week to 10 mg. by the last day.

What to know about steroids:

• Again, the purpose of steroids is to reduce inflammation. When the dosage is high, the immune system will become suppressed. Therefore, you want to take all measures to keep your resistance up and your exposure to infections, colds and viruses low. If you currently have an infection or virus causing the flare-up, try to get rid of the infection/sickness before getting on the steroids if possible.

• A very common side effect of steroids is water retention. Eliminate as much salt as you can from your diet while taking them. This goes beyond table salt. Canned, frozen and packaged foods, pickles, condiments, luncheon meats, etc. are loaded with sodium; so avoid these and eat bland and fresh foods. Often, people will get what they call a “moon face”; the face can become full and rounded.

• Appetite usually increases when taking steroids, so stick to snacks like carrot sticks, celery, apples, or unsalted popcorn. The sacrifice of a strict food regime for a maximum of two weeks is well worth the extra pounds you won’t gain and have to worry about later.

• Once you start steroids, follow the complete program and do not just quit taking them. If you do, it can inhibit your adrenal glands from producing the natural amount of cortisol later.

• A universal complaint is insomnia. Speak with your doctor about sleeping pills. Even with a sleeping pill, you may only get four to six hours of sleep. Try to read, do paperwork, or anything that will keep you from dwelling on not sleeping.

• There are many other side effects when taking steroids; the amount, type, duration will be different for everyone. For example, I get supercharged and euphoric when I’m on steroids, especially when they kick in and my symptoms are improving. I also get very constipated. Other frequent complaints include irritability and mood swings. If you are anxious, consider asking your doctor about an anxiety pill to minimize stress.

• For women, it is not proven yet whether steroids affect birth control pills. It is always a good idea to use additional protection while on steroids.

• Try to temper your expectations and not compare yourself to anyone else. Some people respond faster and better than others. Take notes everyday about what is improving, what isn’t, how much… It will help with your next episode. You will learn your own body reactions and patterns as time goes on.

• When a steroid program is finished, a person will often go into drug withdrawal. Symptoms may worsen again, and different side effects can pop up. For me, I get the shakes, anxiety, weepy, acne, some hair loss, sleepy; and my symptoms will be worse than before I even got on the steroids. After my “withdrawal” period, my symptoms will adjust to what will be normal for me; and all of the other side effects from steroids will go away. After having been on steroids on average of twice a year over the course of my MS, I’ve learned what to expect and how to ride it out.

• There are serious side effects to using steroids over a long length of time—like months or even years. These include things such as bone density loss. As always, one needs to weigh the benefits against the positives when taking any drug.

Sometimes, steroids work for a person, and sometimes they don’t. And of course, all people react to a drug differently—both in response to the effectiveness and to the side effects.

All you can do is try. If it works, great; if it doesn’t, well something else will have to be tried to alleviate the problem.

www.DebbieMS.com

Managing MS vs. Living with MS

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“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to www.DebbieMS.com

MS: What is Causing What?

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The “Chicken or the Egg” dilemma

July 2, 2012

The numbness and tingling is spreading.  The muscles are more spastic, stiffer and tighter.  Legs are weaker; coordination and balance are worse.  Walking endurance is lessoned and the fatigue is escalating.

Figuring out what is going on and what to do about it is frustrating and confusing.  And there’s always the chicken-and-the-egg question of trying to figure out what is causing what.  Is my depression (fatigue, etc.) causing a bad day or flareup, or is the bad day/flareup causing the depression (or fatigue, etc.)???

The MS acts.  But wait–or is it reacting?

It’s very easy to blame what the symptoms are doing and how we are feeling on the MS itself.  However, more often than not, the MS is actually reacting to something else.

So how do you know, and what do you do about it?

MS is highly sensitive to an endless list of things, and existing symptoms intensify due to things like:

• weather changes and types of weather (barometer, heat, humidity, storms)
• sickness (colds, allergies…)
• lack of food, water, rest, sleep…
• medication
• stress (temporary physical/emotional/mental, not chronic)
• monthly menses

For example, a fever can immobilize a person with MS.  When the body is cooled down and the fever is gone, the symptoms will subside.  Spending two hours on the phone trying to resolve an insurance problem can escalate fatigue enormously; taking a nap afterward or venting in some way will ease that stress and help calm down those symptoms.

Or, maybe those intensified symptoms are the result of what I refer to as a ‘pay day’.  For example, if I wake up one day feeling great, I might push myself too hard to do extra things.  Then I ‘pay’ for it the next day and can do only half of my normal daily activities.

In situations like these, the worsening of symptoms can last from several hours, to a full day to perhaps several days depending on what the cause is.  Think carefully about things like this relative to recent or that day’s events:  What happened or didn’t happen?  What changed or didn’t change?

When you figure out what the culprit is, it can then be remedied and the symptoms will calm down.  Things go back to their normal state, whatever ‘normal’ is to you. No residual damage.

So when would the MS itself directly cause intensified symptoms or new symptoms that do NOT go away after a few days?  Now we may be talking about an attack, relapse, or flare-up…i.e. when we come out of remission.  It can just happen on its own, but often will be triggered by any major event, such as:

• falls, accidents, sicknesses, infections
• chronic physical, mental or emotional fatigue/stress
• major life occurrences (death, divorce, new baby, abuse…)

In these situations, or in the case when symptoms don’t calm down after a week, when the cold/infection is over, and rest does improve anything, it’s time to put a call into your neurologist to discuss the situation/ask for some help.  The MS may be relapsing and steroids (like Solu-medrol) may be needed to shorten the duration and severity of the relapse.

Over time, being in-tune with your body will help you figure out if it is the chicken or the egg.

www.DebbieMS.com