Category Archives: MS Information

New Release!

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Managing MS
A Roadmap to Navigate Multiple Sclerosis

It’s done! The second edition of my book Managing MS is out, and I would love for you to read it. This edition is updated and enhanced—it’s amazing how much has changed and happened in ten years.

As in the past, my mission is to continue educating anyone dealing with MS in an easy, uncomplicated way. In addition to the apparent walking difficulties associated with MS, most people aren’t aware of the numerous invisible symptoms and stigmas that are part of the disorder. “What to know, what to do”, is all in one place.

This second edition has more information, resources and links for readers to reference throughout the book. People acquainted with an MSer will learn how to help them. Read what my friend Dave Bexfield, founder of www.ActiveMSers.org has to say:

“Debbie Petrina has managed to improve her no-nonsense, been-there-done-that guide to navigating the often, choppy waters of multiple sclerosis. For personal advice without the unnecessary puffery, it’s just what the doc ordered.”

If interested in a copy, here’s the link:  http://debbiems.com/orders_275.html  If you like it, please write a review on Amazon. or wherever you bought it. And then, spread the word to help others understand multiple sclerosis!

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

How do you Manage MS?

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“Want some help?”

Everybody wants a cure for MS, to halt the progression of it, and restore the damage it causes to us. But what do you do in the meantime until those things happen?

You manage your MS effectively.

If you ask people with MS how they manage it, most would respond by saying what treatments/meds they are taking and then add that they may exercise, do yoga, etc.

While this is true, it’s only a small part of a big answer. Everything about MS is complicated: the diagnosis, the symptoms and relapses, treatments, health team support, relationships, the explanation…  ALL of these things have to be managed effectively in order to survive MS.

One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case. Yes, let me repeat that– One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case.

I know, and I know countless others who know. Beginning in 1980, I’ve lived with it for 34 years, and have been actively involved in the MS community for nearly thirty years. An ordinary person of moderate means, I went through motherhood, had a career I had to eventually give up, managed a household, and enjoyed life.

In a nutshell, these are the main objectives in managing MS:

1. Prevent sickness/infections, physical problems, and long-term chronic stress.
Why?  Because any of these will trigger a relapse. And relapses usually result in progression and nervous system damage.

2. Take care of  your body in all ways to be healthy.
This includes getting enough sleep, exercise, eating sensibly, managing stress, being mentally and emotionally happy, etc. This also includes things like weight watching, no smoking, etc.

Why?  Staying healthy keeps one’s resistance up to prevent getting sick (thus preventing relapses) as well as keeping symptoms from intensifying. In addition, maintaining wellness helps prevent your body from getting other serious problems like high blood pressure, diabetes, poor circulation…

3. Carefully choose and monitor your treatments.
While drugs are often helpful for treating symptoms, relapses and slowing progression of MS, there are downsides.  First, one must remember that all drugs have side effects that add stress and other impairments to the body. Second, MS is a life sentence; one may live decades until a cure is discovered to halt progression or restore damage. Every drug taken is passed though the liver and has other risks. There is not a treatment that exists today that totally halts progression, relapses, or improves symptoms.

4. Use a 2-prong approach when managing symptoms.
In addition to using medications, there are SO many ways that MS symptoms can be managed non-medicinally—pain, spasticity, bladder issues…  Often, using a combination of using medicinal and non-medicinal means together can be helpful as well. For example, I take baclofen and do stretching exercises daily to reduce my spasticity.

In addition, alternative non-medicinal therapies  have been successful like yoga, acupuncture, massage, pilates, etc. to help with symptoms.

Managing MS effectively requires a tremendous amount of knowledge and support. It’s hard, it takes time, requires change, but it works.  However, learning to managing MS is a daunting task because we know that no two MS cases are alike and the disease is so unpredictable. Furthermore, because there is so much information available from so many sources, one can become overwhelmed and confused.

Want some help?

My book “Managing MS: Straight Talk…” is now available on eBooks for only $2.99 . You can also check out my website below for oodles of info—articles/resources with links, videos, my MS blog of nearly seventy articles, my credentials… The information is accurate, easy to understand, and concise.

My personal mission is to help others dealing with MS, and these two tools—my book and my website—will definitely help you with something. There is nothing to lose, and I guarantee something to gain!

 

**Video:  “How to Manage MS: Two Tools”
https://www.youtube.com/watch?v=iliPH66JCaw

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

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

Serious Effects of Getting Sick for MS/Autoimmune Disease Patients

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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 (DMT’s) suppress the immune system. Corticosteroids used to treat MS relapses also suppress the immune system. These 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