Take Care of Your Bladder!

“What to know – what to do.”

February 25, 2013

We are taught to take of our teeth, skin, heart, weight and so on every day. But our bladder, too?

Yep. We don’t generally think about the bladder until something goes wrong with it, like when it starts to leak or we feel that something is not working correctly “down there.” Then we have to figure out how to fix the problem.

To start, everyone—whether they have MS or not—should know about urinary tract infections and steps to take to prevent them. That’s because they are easier to get than many people think, and they do not go away on their own.

Urinary Tract Infections (UTI’s)

The primary function of the bladder is to serve as a reservoir to store urine that is produced when the kidneys filter waste products from the blood. Most UTI’s occur when bacteria enter through the urethra and stick to the bladder wall. And most UTI’s are caused by bacteria from the colon and rectal area. Once there, the bacteria will multiply rapidly.

Women are more prone to UTI’s than men due to their short urethra, a tube from the bladder to the urinary opening of the body. Since it is only about an inch long, there is less of a barrier to the entry of bacteria—so something like sexual activity increases their risk. Menopause also is a risk factor because the reduced level of estrogen allows an overgrowth of bacteria of the urinary opening.

What to do to help prevent a UTI:

• Keep the private area clean and dry. Always wipe yourself from front to back thoroughly, not back to front. If protective pads are used for discharges or leakage, change them and clean yourself often. Moisture between the legs is a breeding ground for bacteria.

• Drink plenty of water all day long—don’t restrict fluid intake. A high daily urine volume will wash out bacteria in the bladder. A low daily urine volume encourages UTI’s by failing to wash out invading bacteria; it also can cause stone formation and dries out the feces. You know if your fluid intake is good if the color of your urine is very light in color.

• Keep a high level of acidity in your bladder reservoir—this will inhibit growth of bacteria. How? Take 500-1000 mg. of vitamin C daily. (Do NOT eat or drink oranges or other citric fruits for this purpose as these actually increase the alkalinity of the bladder!) Many resources will tell you to drink cranberry juice, but I prefer not to drink the extra calories since vitamin C accomplishes the same thing. There is also a cranberry supplement available called TheraCran, but it is pricier than Vitamin C.

• Make sure your bladder is as empty as possible when you urinate. Don’t hold your urine for an extended period of time—when you have to go, go!

So how do you know if you have a UTI? Here are signs, of which some or all can occur:

 cloudy urine
 odor to the urine
 blood in the urine
 burning sensation with or without urinating
 urgency, frequency of urination
 fever

If any of the above signs appear, call your doctor immediately to have your urine checked. An antibiotic is necessary to eliminate the infection and possible further complications. Once there is a UTI, taking vitamin C, cranberry juice or consuming a lot of water will not cure it, and it won’t go away on its own.

Since this is an MS blog article, here is a special note to those with multiple sclerosis: A UTI will definitely affect your other MS symptoms as this is an infection, and if left untreated too long, will cause a flare-up and possible further complications.

Other Bladder Problems

The nerves and muscles work together in perfect coordination to control the storage of urine, signal the brain and void urine. But there are things that affect this perfect coordination, and these symptoms may happen:

• frequent urge to urinate
• frequent urination
• hesitancy in starting urination
• difficulty in keeping the urine flowing, or finish voiding
• incontinence
• nocturia—frequent voiding at night, at times without waking.

There are numerous reasons to cause these symptoms. Women sometimes have bladder issues due to pregnancies. Men may have a prostate issue. Others tend to have problems because of their age. And still others develop problems because of an illness. People with multiple sclerosis commonly have what is called a “neurogenic bladder”, whereby that perfect coordination of nerves and muscles become impaired.

The good news is that most of these types of problems are treatable under the supervision of a good urologist, by medications or other procedures depending upon the issue.
And fortunately we now live in an age when we can talk about bladder problems openly without embarrassment.

Doing nothing and just wearing Depends all the time is not a good strategy. Untreated bladder dysfunction can cause damage to the urinary tract, urinary tract infections, or damage to the kidneys. If you have multiple sclerosis, you need to see a urologist who knows about MS and neurogenic bladders, and begin to learn about bladder management as soon as possible.

Due to my MS, I had all six symptoms listed above with my bladder that started over twenty-five years ago. I found an excellent urologist who put me through several tests to examine and evaluate my bladder (dys)function. This is common practice. Then he taught me what to do using medications and self-catherization, and it changed my social and physical life immensely.

It is a process that takes time and practice but is worth it in the long run. I am really proficient at bladder management and though the damage to my bladder function is severe, I have been able to be like a normal person, and nobody would ever guess that I had problems in this area unless I told them.

I control my bladder now; my bladder doesn’t control my life!

www.DebbieMS.com

Diagnosing Multiple Sclerosis

      “What’s going on?—I’m so scared!”

February 5, 2013

Diagnosing multiple sclerosis is difficult. Being tested and waiting for a diagnosis is grueling for both the patient and their families. Even in this day and age, the process can take months, or even years in some cases. The stress of the testing, office visits and waiting can send someone over the edge.

I often see online posts about this subject, with an added comment like “I’m scared to death…” This always upsets me because someone or some article is not doing the job of explaining an MS diagnosis in an easy-to-understand manner.

Diagnosing Multiple Sclerosis

It takes a long time to get a diagnosis because it is a process of elimination, to rule out other neurological disorders that could be causing the same type of symptoms.

The process begins with a clinical office evaluation, whereby many things can be initially noted, like your history. There are indicators that a good neurologist will check out—such as the Babinski sign (if the bottom of the foot is scraped and the big toe goes up, not down, it is an indication of a neurological disorder.) Other examples? Hyper reflexes, discoloration of the optic nerve in the eye indicating inflammation/optic neuritis, signs of imbalance or incoordination when walking…

Next come the numerous tests—MRI’s, spinal taps, EVR’s, etc to look for things such as tumors; many neurological disorders have symptoms that mimic multiple sclerosis like Lyme disease or fibromyalgia. Note: The MRI is a powerful tool, but a neurologist will not only use that particular test for an MS diagnosis as many people like to assume. Why? Because lesions may not show if an MRI is done only on the brain; an MRI should be done on the spinal cord as well to check if lesions are there. Also, sometimes spots on the MRI may look like lesions, but they may be due to another reason.

The term “multiple” in multiple sclerosis is important. Why? Multiple symptoms in multiple parts of the nervous system have to occur over multiple periods of time. My first relapse lasted ten months—I had both sensory and motor disturbances in my left arm and left leg. Mysteriously, all symptoms went away except for a slight residual in my left arm. I didn’t have my second relapse until over two years later. That time I went partially blind and I was wetting the bed. When I went back to the neurologist, I was diagnosed immediately! Bingo!—a multiple occurrence in addition to the multiple symptoms in multiple parts of my body.

Finally, a neurologist will most often not give a definite diagnosis until they are definite that it is MS.

In the meantime, what should you do while going through this evaluation and waiting game? Try to stay as healthy as possible. Take all measures you can to sleep, eat, reduce stress and keep your resistance up so that you don’t get a cold or virus. And know that having multiple sclerosis is not a death sentence or that you will end up in a wheelchair. Read on…

A Multiple Sclerosis Diagnosis

Getting an MS diagnosis is extremely frightening. I went through it thirty-two years ago myself, and over the years I have talked to so many people about this as a trained, MS-peer counselor. The fear of the unknown is overwhelming.

Sadly, there are many misconceptions about MS that create a lot of fear. So for starters, here are some facts to clear up some common ones:

• No, MS is not fatal (though in past decades people died from complications of it such as urinary tract problems that led to kidney failure…)

• Although there is no cure, there are treatments available to help symptoms and to slow the relapses/progression of MS.

• It is not congenital (people do not directly inherit MS, though they now know that there is a genetic factor involved.)

• It is not contagious.

• Not everyone ends up in a wheelchair—in the 1980’s the estimate was 1 in 4 (25%). Today, statistics are on your side for a better future prognosis, especially with the new treatments available now and the tremendous research that is happening.

So what should a person do initially when he/she receives a MS diagnosis? These are my recommendations:

Gain as much knowledge and support from the right places. I suggest starting with the National MS Society and other National MS Associations in the beginning. But, there is so much information and so many other resources available it can become overwhelming, confusing and perhaps create more fear. Take baby steps when gathering information.

Your best source of comfort and information will be from another person who has MS, a peer. However, be selective with whom you talk to and use good judgment. Some unknown people online can cause confusion, be uninformed, misleading, and negative.

Make sure you have a good neurologist who treats many others with MS or is a MS specialist. You need to trust your doctor and feel comfortable with him/her. Also, make sure that any other specialists that you may need to see (e.g. physical therapist, urologist, etc.) understand MS and have dealt with MS patients.

Don’t freak out if you don’t get on a treatment right away–it takes time to figure out the right thing to take/do, and waiting won’t severely impact your course, for better or for worse. Keep a journal. You will start to see patterns and learn how your body acts and reacts. An easy way to do this is to use a 12-month calendar, with large blocks to jot brief notes in. It is helpful to see patterns when you are looking at a whole month at one time and easier to reference.

Remember that staying healthy is essential–getting illness/infections could trigger a relapse. MS is an autoimmune disorder; therefore the immune system is not working properly. When you get sick, you may be twice as sick and it may take twice as long to recover as compared to a “normal” person. Relapses usually result in some residual (damage). It’s a must to keep your resistance up—food, sleep, stress management…

Finally, there ARE many things a person can do to manage their MS! The biggest mistake someone with MS can do is nothing, or expecting a shot or a pill to fix everything. There is no magic pill or shot yet that you can take to make it all go away. It takes work, discipline, dedication, attitude, and the common sense to take care of yourself. MS is still a lifetime illness. Until there is a cure for multiple sclerosis, the goal is to stay healthy, prevent new attacks, and prevent disability.

I am a MS survivor as are so many others! Check out my website for more information.

www.DebbieMS.com

Attitude is Everything

“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com

Fatigue & MS

“What it is—What to do”

“People look at me and just cannot understand why I get so tired.” (MSer comment, March 2011) This is a quotation I used in a chapter about fatigue in my book, Managing MS: Straight Talk….”

During a brief conversation with my sister last night, she remarked that she had no energy, she couldn’t think clearly, and all she wanted to do was lie down because she felt so exhausted. She has a virus. I got it—I knew exactly how she felt.

I often describe MS fatigue to people that it is like having a cold or virus—that you feel so exhausted all you want to do is lie down. Out of all the symptoms I and others have experienced with MS over all these years, I truly believe this is the one symptom that is the most difficult one for everyone involved to understand and know what to do about it.

But fatigue is extremely difficult for a non-MSer to understand because you can’t always see it—there is no stuffed up nose, swollen eyes, or sneezing. Or, someone may say “you look tired, maybe you should take a nap.” Okay, a nap may help, but fatigue isn’t only due to being sleepy.

It doesn’t matter if the MS case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is almost always present with MS, 24/7. Why? Fatigue exists because it is caused by MS–a disease, a chronic illness–and it causes other symptoms such is walking problems to intensify.

Fatigue is the hallmark symptom of MS. It is a universal complaint by 80–90% of MS patients. And it is finally being recognized as a serious obstacle for employment by the Social Security Administration when applying for disability benefits.

• A MSer will get fatigued easily, whether other symptoms are present or not. Simple activities like making dinner or talking on the phone too long can be exhausting. The slightest thing can make it worse, such as not eating, drinking enough fluids, or being overheated.

• Fatigue is compounding and escalates quickly if MS becomes active due to a relapse, or the amount of disability has increased over time. For example, sleep disturbances due to bladder problems at night, or extra effort required to walk because of spasticity or other gait problems, will impact fatigue significantly. Energy is reduced, weakness increases. This causes stress, frustration, and depression that will then lead to even greater fatigue.

• Fatigue is often caused by medications taken for other MS symptoms.

Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. Yesterday I came across an article entitled What You Can Do About Fatigue From MS, and is worth a read. It is from a blog I subscribe to called Stu’s Views & M.S. News; the source of this article was WebMD. Here’s the link http://bit.ly/Wrk8M9 .

There ARE many ways we can help to manage fatigue, and even if some do not work, other things may. At least we can try and keep on hoping.

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

Office Visits with your Neurologist

“Good Advice for Being Prepared”

December 10, 2012

Not having enough time with your neurologist or feeling that you didn’t get your questions answered is a common complaint by patients today. Often we blame the doctor and his/her office but there is the other side of the story—the doctor’s!

Be Prepared!: How to make the most of office time with your neurologist… is an article worth reading. Written by Avitzur, Orly M.D., M.B.A., it was printed in the current issue of Neurology Now—the American Academy of Neurologists Magazine for Patients and Caregivers.   http://bit.ly/QSp1uH  I’m taking the liberty of sharing this via by blog, since you are my friends I am given the option by them to share this with my friends :).

Finding a neurologist that you are comfortable with, one having high credentials/reviews, and one that has a specialty in your particular chronic condition is essential. After you read this article, ask yourself: do you do this before your visit, and does the doctor respond in the way this doctor suggests?

For those of you not familiar with the magazine Neurology Now, you take a look at it online and subscribe to it for free. While it addresses many neurological disorders, I have found useful information relating to multiple sclerosis for myself. And other things like Parkinson’s disease that my friends have…

www.DebbieMS.com

Managing MS: Straight Talk…

“Why Read This Book?”

There are many books about multiple sclerosis. If you want or need to read something about this neurological disorder, I’m going to explain why Managing MS: Straight Talk From a 31-Year Survivor is THE book you should read.

I will give you my pitch that my book is unique because of its presentation, content, creditability and tone:

• MS is complicated to understand. I make it easy to understand using a “what to know—what to do” format for a wide array of subjects like symptoms, treatments, interpersonal relationships…

• It’s short, inspiring, and interesting. People who have read it so far are amazed at what they learned in the short span of only several hours it takes it read. Wonderful reviews have been received from a wide range of readers.

• People are afraid of MS. Even the sound of “multiple sclerosis” is chilling. A main objective when I wrote the book was to help reduce the fear of living with MS, no matter if you have it or not. I felt it crucial to use a tone, words and expressions that would enable the reader to feel comfortable. I clear up misconceptions about this disorder.

Managing MS is accurate. Information and resources contained within have been endorsed by a variety of health care professionals, including one of the best neurologists (MS Specialist) in Phoenix, AZ.

• I am a peer. I lived the major part of my adult life with MS and survived it. This book is not a story about me, although I do share personal experiences to explain things. It is a guidebook incorporating my experiences with thousands of people I interacted with over 25 years. I have been and continue to be a volunteer, educator, counselor, and researcher in the MS community.

• It’s affordable/ available in all formats. Even if you pick up a few tips, it’s worth it.

• There is information that is useful to those living with other chronic diseases, such as how to handle fatigue, doctors, or interpersonal relationships.

I invite you to visit my website www.DebbieMS.com  that gives much information about me, my credentials and Managing MS: Straight Talk From a 31-Year Survivor. It also includes self-help videos, weekly articles I write, other activities I engage in to help persons dealing with MS, and an email address where questions can be submitted to me. Here are some quick links within my site:

• A profile The National Multiple Sclerosis Society posted on their website this summer. http://nationalmssociety.org/online-community/personal-stories/debbie-petrina/index.aspx

• A book trailer I recently created myself http://www.youtube.com/watch?v=4X0YErTxXbM&feature=youtu.be

• Orange Awareness Campaign for MS I created and launched (this is fun!) http://www.youtube.com/watch?v=JtMjKXP4dQU&feature=plcp

• A “Meet-the-Author” video at the bottom of the Home page on my website that discusses many aspects of MS, not just the book.  Great for “newbies.” www.DebbieMS.com

I want to emphasize that this book is about managing MS. There are many things a MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease, both with and without medications. But this all takes knowledge, support, work, dedication and discipline. There is no magic pill or injection that will manage, fix or control MS. Not yet.

So if you are looking for a book about multiple sclerosis that is an autobiography, full of specific medical terminology, or containing the latest breakthrough drug or study, this is not that type of book.

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

Give a Gift of Knowledge & Support

“A Holiday Stocking Stuffer”

November 26, 2012

Every week I write an article with substance for persons dealing with multiple sclerosis. As the holiday season is upon us, this week’s article is about giving a gift of substance to someone or even to yourself. Like a good book about a serious illness.

I wrote my book, Managing MS: Straight Talk From a Thirty-One Year Survivor, to help others dealing with MS. But Managing MS also has many chapters suitable for persons dealing with other chronic illnesses/autoimmune diseases, or for people in general who want to learn about something new.

This upbeat self-help guide is a knowledge and support tool. Acquiring more knowledge and support about something that is unknown will result in less fear, mystery and misconceptions about it. Packed with information and inspiration, Managing MS will leave the reader feeling both good and grateful in addition to the knowledge acquired– whether one does, or does not, have a serious illness or disease.

Many have told me it is a book of substance. Recently, a man approached me when I was volunteering at an MS Walk, and said he came for the purpose of meeting me. He read my book and wanted to thank me in person and sign it for him. Diagnosed just a year ago, he said it changed both his and his family’s lives. The entire staff of my PCP’s office read the book, and my PCP bought copies to give to a MS patient that would come in for an office visit.

It is a short, easy read of less than 150 pages (with resources) that would make a great stocking stuffer.

BUT…If my book is not of interest, get a book—any meaningful, inspiring book—that will give knowledge and support of a subject. It will be a worthwhile gift and a great stocking stuffer.

After all, ‘tis the season of sharing, giving, helping and hope. 🙂

www.DebbieMS.com
Book trailer    http://debbiems.com/book_278.html

Giving Thanks to What Really Matters

“Positive Perspective & Attitude”

November 19, 2012

Recently an MS friend of mine and I were having a chat, and we were talking about how MS has impacted our abilities over the years.   Ah, the value of a peer to share with…

Being an optimist, I said there is a silver lining in everything.  If it wasn’t for me having MS, I would have never met the truly wonderful friends I have today or the beautiful people I met during the major part of my life.  Good friends are priceless, and I am so grateful to have them.

I would never have met them if I didn’t engage myself in the world of being a volunteer.  Volunteers are special people.  They give of themselves and ask for nothing in return.  They are there when you need them, smiling.  That is priceless, and there ARE free things in life.  I would never have survived MS because of their support, and will be ever grateful to them.

Sure, I have my boatload of problems due to the MS.  Just like others who have problems with cancer, special needs children, loss of limbs because of a war… Life is not equal for everyone, and things surly can be a lot worse.  I’ve lived through many major-life crises not related to MS—deaths, job losses, melanoma—but I always came through them.  I give myself time to grieve, vent and complain; then establish my priorities and focus on what really matters.

Sometimes I make a list of what I have to be thankful for, and it is very long.

Things like these keep me optimistic and having a good attitude.  Without a good attitude and a positive perspective, I would have shriveled up long ago; like a flower that would die without sun and water.

So before this Thursday, make that list, and thank everyone that has helped you in some way.  It will make you feel good.

Happy Thanksgiving!

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 (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

The Sensitivity of MS Symptoms

“It’s only a Pay Day”

November 5, 2012

Two days ago I participated in two events that lasted all day with only a two-hour break between them. I normally only plan one outing per day, but both events were very important to me and just happened to fall on the same date.

When I planned for the events, I knew I would be fatigued and my MS symptoms would be whacked out afterward. So I made sure I got a good night sleep the night before, planned to lie down for an hour between events, then do absolutely nothing else the rest of that day when I returned home.

The fun and adrenaline enabled me to sail though the day. And sure enough, I returned home exhausted but fulfilled. The mental and emotional satisfaction was worth the physical stress I endured. After some Chinese take-out, I went to bed.

Yesterday, after nine hours of sleep, I woke up still feeling wiped out. It felt like I had a virus. My muscles ached all over, I felt nauseated and dizzy, and all I wanted to do was lie down. Not only did I have overwhelming fatigue, but many of the symptoms I handle with my own case of multiple sclerosis were intensified. The spasticity flared to the point that my legs were “frozen” straight, the pain in my back was unbearable, and the bladder medication wasn’t working. My mental faculties were off– I couldn’t concentrate and I kept forgetting things. Both hands were exceptionally tingly and weak.

It was a “pay day”.

I knew from experience not to freak out. A couple of days of mostly rest and minimal activity would calm the symptoms; I would revert back to my “normal” state. It was just a temporary worsening of symptoms triggered from the excess stress. And I also knew from experience that I didn’t do any permanent damage to my nervous system.

Neurologists like to use a fancy term for this, and call it a pseudo-exacerbation. I don’t like that term because to me it is misleading, implying an actual flare-up or attack. But it’s not! I was “paying” for overdoing it on the previous day, which is why I call it a “pay day”.

It’s like a hangover after a night of too much wine! Rest up, drink plenty of water and eat well. All will pass. Once in a while it’s okay to do this; but if you over indulge everyday then it become a chronic problem.

Any stress can intensify symptoms, as well as other things such as heat, hormones, or even forgetting to eat. I know from experience what causes my symptoms to temporarily worsen, and I know how to manage to call them down.

Aggravating and annoying? Yes. Cause for worry or calling the doctor? No.

I’m still extra fatigued and not quite my “normal” self after that long day I had. But it was worth over indulging and I will do it again.

www.DebbieMS.com