Hope

Often, I find myself scouring medical articles for a glimpse into what is being done within MS research. Today, I found an interesting combination of ideas and theories that I've yet to explore previously. Though the idea is rather far-fetched, it's interesting to think about the possibilities of a cure for an incurable disease. Though I do not readily support these ideas, I do find them to be interesting, and I do see the purpose in its content.

Please keep an open mind when reading and watching the below information. You may find yourself sitting in silence as I did after I consumed its information.

Article on Possible MS Cure

Video on Possible MS Cure

Is it You?

You do not know me, but I feel a strong connection with you after reading your posts of encouragement, bravery and self-discovery. I was diagnosed with MS ten years ago and feel ashamed for my actions, thoughts, behavior, and attitude since learning of the diagnosis. You being a young woman of 27 who was diagnosed in the prime of her life at 20 only to come out a stronger person having been diagnosed still floors me. I wish I could say that I am like you and am a stronger person after going through what I have. I'm not. In your post, "Seven Years," you mentioned that you were selfish before the diagnosis, that you believed your life to be over, that you were okay with the disease running its course and taking over your body. You've mentioned in previous posts that you were and still are scared. You've mentioned that you felt alone and still have days where you have feelings of loneliness. How have you been able to get through something so horrible only to become a better person for having gone through it? How can you be so positive when you have a disease that will shorten your life, that limits your overall joy in life, that prevents you from doing what you love, that shadows you with fear daily?

I am at a point in my life (43) where I feel that no one understands, no one cares, and that I will get worse. I pray for the day that I can have the same outlook that you have and begin to accept what I cannot change and help others like you are. Until that day comes, I feel as though I'm trapped in a world of pain, fear, and the dependency of medication.

I read your posts as soon as they are published. The information you've shared has really allowed me to question the person I am today so I can become a better person for myself tomorrow. Your words do not go unnoticed and your actions show how beautiful you really are. We are in this fight together. Thank you for fighting for me.

Yours Truly,

Louise - Washington

***

When I first developed the idea of writing this blog, I did it purely to relay the information I have gathered and learned about over the last five or six years to those who need it. When I was diagnosed, I felt alone. I had questions, but I could never really get them answered. I'm writing this to answer as many questions as I can about what I know, and along the way, I hope we can all learn more about a disease that can be extremely devastating.

Louise, though we have never met, and though I can only reach you through the words I write, never forget that there is a very unique bond between you and I: through our diagnosis, our struggles, our fears, and our triumphs, we can relate to one another on a level that many cannot comprehend. When one has a life changing event occur in his or her life, the way the event is handled depends on the process of grieving and the individual. It is not uncommon to have negative thoughts, behaviors, actions, or attitudes when enduring what you are. In fact, it is very normal.

The fact of the matter is that I am scared every single day. However, just because I am scared does not mean that I can dwell on something that has not happened yet. Why live a life dwelling on something that has already happened in a negative way? Why live my life dwelling on something I cannot change? It is no ones fault that I am sick; it's not my fault, either. I have accepted what I cannot change because that is the type of person I am. Most importantly, however, I am living my life in a way that allows others to realize that a life is not over when something such as MS comes creeping in. Although I cannot change what has happened, I can determine how I handle the situation(s).

I started playing the violin when I was in first grade. I'm rather good at it, and it is something I thoroughly love to do. However, the dexterity in my hands have lessened since the diagnosis resulting in the inability to do something I love. This does not mean that the music is not still inside me. This does not mean that I don't still understand the connection I feel with the music that I used to play. This does not mean that I have given up classical music forever. This simply means that I have to find other ways to do something I love. I can still hum the chords in my head while I'm writing music. I can still pick up my violin and hear the rich sound radiate from its core. Even though I cannot continue doing what I love doesn't mean that I no longer receive joy from it.

I remain positive for myself and others. If I allow myself to dwell on the negative, what does that say to my family, my friends, to my growing niece and nephew? I do not, under any circumstance, allow myself to give up nor will I allow that of those I love. Regardless of the adversities we face, there is always something that could eventually stand in our way to prevent our dreams. It shows our character to move forward past the road blocks to achieve something far greater than we originally imagined.

As I have said before, I am scared every single day of my life. I'm scared that I'll wake up unable to walk. I'm afraid that I'll close my eyes only to open them without the ability to see. I'm afraid that I won't be able to feel the small kisses of my niece or nephew or feel the arms of my boyfriend wrapped around me. I'm afraid that my years of education and my degree will be of no use to me if my cognitive abilities fail me. However, I do not dwell on something that has not happened. I can't - you can't. The fear we possess can feed and radiate ten fold if we allow it. This fear is what ultimately takes over us, and we are much better than that.

All I can say to you is for you to live your life, love what you do, and do not be afraid of something that has not happened. Make 2013 your year to become the woman you want to be despite having MS. Always remember that YOU have MS - MS does NOT have you. You control your emotions. You control your reactions. You control your behavior. You control what you can and cannot do.

Louise, it took me many years to get to where I am at today. I still have my moments of being paralyzed by fear and worry, but the support I have is something indescribable. I know I can do anything I set my mind to, and so can you. You are stronger than you believe, and when you truly allow that fight to radiate from your being, you'll be able to conquer the biggest obstacles and/or fears.

I am here with you fighting for the same things as you are. How you choose to win your battle is purely up to you, but I have the utmost faith that you can and will come through this a much better, much stronger, and more courageous woman than before.

Seven Years

It's difficult to remember my life before Multiple Sclerosis. Although I always was able to pride myself on being a nice person, there were numerous aspects of who I was that was, well, selfish. Many contribute it to being 20. I was still learning about the world and myself.

I guess that sounds good enough.

I had grown up with an ill mother who, for one reason or another, could never quite take care of herself to prevent the inevitable. She always seemed to lean on others which is part of the reason why I believed I was as caring as I was. It is all I ever knew to be. Quite frankly, it was my mother who truly made me into the persona I am today. I would never know how to care had it not been for her. However, once I was in college, once I was on my own, the only person I truly seemed to care about was myself. Sad, I know, but I felt that it was my time to live my life.

My selfishness soon crumbled beneath me.

December 17, 2005 is a day that will forever remain with me, and to a certain degree, haunt me. This was the day I was diagnosed with Multiple Sclerosis. I knew nothing about the disease. I had no idea what it meant to have MS. I strongly believed that my life was over. I remember trying to fall asleep that night in my hospital bed with tears streaming down my face. I remember thinking that I lived 20 years, and although short, it was a nice life. I had memories. I had friends. I'm sure someone or something would remember the vibrant girl I was in high school.

That soon passed. I felt like an empty shell of who I once was. This disease had stolen who I was trying to become. This disease robbed me of a life I dreamt of having. This disease would take me prisoner, and I was okay with that. I didn't want to give any more of myself. For all intents and purposes, I was content with letting it run its course and do what it wanted with my body.

Eventually, those thoughts left my mind, and I was determined to prove the disease and my doctors wrong. For all who knew me, this was something I would always do. I fed off of proving something/someone wrong.

Years of being a guinea pig to medications I knew nothing about, to side effects that made me feel like I was dying, to anxiety, to fear, to many constantly telling me that it was okay to just "give up" soon took it's toll.

However, thinking about that now still makes me giggle a little.

I had developed a mindset that consisted of yelling at myself if I couldn't do something then trying until I could eventually do it. Walking, running, talking, forming coherent sentences, giving myself a shot, typing, buttoning shirts, zipping pants, opening a car door, unscrewing bottle caps, taking a shower...everything - even if it took me hours, even if it hurt, even if the frustration was so immense that I sobbed like a child while doing it, I still did it.

Though seven years have passed, I still remember December 17, 2005 like it was yesterday. Out of the shock of it all, I was happy that I knew - finally - what was wrong with me. I finally became an advocate for my health. I stopped taking the medication that caused liver damage and have been MS therapy free for a year. I still have my bad days. I still fall asleep at night hoping that I'll wake in the morning still able to walk, I still fear what may happen to me as I get older, but now, it's all different.

Now, instead of giving up, instead of allowing something to take over me, instead of constantly questioning why, I use my experiences, my hopes, and my drive to move forward to help others. Now, I find myself better capable of empathizing with others and being the support they desperately need. Now, I love my life. Now, I love my family more than I can imagine because without them, I'd still be that empty shell of a person I once was. Now, I thrive on doing something new. Now, my drive to prove so many wrong is stronger than it ever was before.

I was told I wouldn't walk normally again? No, I walk perfectly.

I was told I wouldn't be able to finish school? No, I earned my bachelor's in May and am going back for my master's in September.

I was told that I would be forever required to be on medication to sustain myself? No, I've been away from MS therapy for a year and feel better now than I did just a year ago.

I was told that I wouldn't be able to have a lasting relationship? No, I'm with a man who celebrates my triumphs and picks me up when I fall.

I was told that my life was over? That's just funny.

It's amazing how something so devastating can be such a positive turn in an individual's life. Being diagnosed with MS was a road block that I have and am enduring. However, being diagnosed with MS was a blessing in disguise to me. It helped mold me into who I am today, and who I am today is just a stepping stone into the phenomenal woman I am becoming.

Flu Shot and Multiple Sclerosis

This weekend, I went out and received a flu shot. For the past seven years, I've had multiple people tell me multiple things about getting the flu shot. I've been told that my body isn't healthy enough for the flu shot, I've been told that I must get the flu shot to ensure that I won't die (true story...someone DID say this to me), etc. The truth of the matter is that it is a choice that we can all make regarding vaccinations. So, how should it be determined if an individual who happens to have MS receives a flu shot?

Let's start from the beginning:

The flu shot is an inactive vaccine which means that it contains a dead virus that was originally grown in eggs (Stachowiak, 2009). It's given through a syringe in the arm. The specific shot contains three strains of the influenza virus, and it has been determined that these three strains (based on research) will offer the most defense from the flu for the particular year. However, those with MS should not - I repeat - should not receive the FluMist which is a nasal spray vaccine because it contains a live virus which can be harmful to those with MS.

There are certain indications from the CDC that will illustrate who should or should not receive the flu shot:

1) People 50 years of age or older
2) Residents in long-term care facilities
3) Children 6 months to 5 years
4) Those with chronic cardiovascular and pulmonary disorders including asthma
5) Those with chronic metabolic diseases, renal dysfunction, hemoglobinopathies, or immunosuppressive or immunodeficient disorders
6) Pregnant women
7) Anyone who can infect high-risk people, including household members and caregivers; anyone coming into contact with babies younger than 6 months old
8) Anyone who wishes to reduce the likelihood of getting the flu

(Stachowiak, 2009).

Those with MS should understand the following:

Limited mobility impairs lung function. Since MS can prevent motion, it is imperative that the flu shot be considered as inactivity can affect pulmonary health.

Taking medications suppresses the immune system. Those who receive a monthly infusion of Solu-Medrol or immunosuppressants should consider getting the flu shot.

Most important - the flu shot can prevent relapses! Having the flu can bring on relapses or make MS symptoms worse. This, in and of itself, is the most rewarding point of the flu shot.

Reasons one may not want to receive the flu shot:

If you are having a relapse, the minor side effects of the shot could worsen the relapse or doses of Solu-Medrol could reduce the effectiveness of the vaccine (Stachowiak, 2009). It is recommended that individuals wait 4 to 6 weeks after their relapse started or 4 weeks after the last dose of Solu-Medrol to receive the vaccination.

If you are on Tysabri, speak to your doctor. Trust me on this one.

I know that receiving the flu shot is awful. The regular side effects of the vaccine are enough to make a grown man whimper. However, when I receive the flu shot, I do tend to experience MS-like symptoms pertaining to dizziness and feeling confused or cognitively dull. I've always been able to allow these side effects to subside by taking a Tylenol regimen an hour before the shot then a few times a day for the next couple of days.

Please, protect yourself.

Interactive Website Explaining MS

I could not help but share this! This provides and interactive experience regarding a healthy person and one with MS. Please visit!

 http://www.understandingmultiplesclerosis.org/

The Road to Oral Medications Approved to Treat MS

Since being diagnosed with MS almost seven years ago, I've had my fair share of playing the guinea pig with MS therapies. 

The first medication I was on was Avonex. This nice little treat of an injection (sense the sarcasm) was administered once a week subcutaneously. The side effects were immense and included nausea, vomiting, headaches, rashes, hives, delusions, dizziness, fever, chills, exhaustion...you name it, and I'm certain it was there. However, I pushed forward with the medication hoping it would work. After my seventh hospital stay in a year and a half and test results revealing the progression of the disease had not slowed, I was taken off of Avonex.


Hooray?


No.


After Avonex, I was given 3,000 units of Solu-Medrol once a month. Told that this medication would give me the energy needed to live a relatively "normal" life ultimately meant that, again, my doctors were trying a cocktail of medication and hoping something would work. The taste alone was enough to make things awful. The metallic, rancid taste left in my mouth for hours after each infusion was horrible. The blisters inside my mouth were worse. My vision was damaged. I began losing hair. I gained weight. I had absolutely no energy. Horrible mood swings. Sigh. You name it, and I'm sure I experienced it. At my request, I was taken off of the medication.


Relief?


Somewhat.


The next medication, the one that would eventually become a security blanket to me for nearly five years was Rebif. An injection self-administered three times a week worked - in the beginning. However, the side-effects became more apparent after the first year. Hives. Redness. Swelling. Nausea. Vomiting. Headaches. Chills. Fever.


Here we go again.


However, I pushed forward. It wasn't until year four that my stomach (the area I administered the shot) had become a breeding ground for infections. I developed cellulitis which is a reaction of the cells under the skin dying and forming large, very hard, very painful blisters. My body started rejecting the medication resulting in me having to push on the injection site for at least fifteen minutes just to get it to stay under the skin long enough to be absorbed by the tissue. Unfortunately, now, my abdomen will be forever scarred from the agony I've placed my body under for so long. Permanent bruising, dimpling, scars, and red marks blotch my stomach making it incredibly difficult to look at myself in the mirror. It wasn't until I started developing other side effects - yellowing of the skin and eyes, severe bruising, severe nausea, awful abdominal pain - that my doctor decided it was time to run a series of tests to see what was going on in my body. A liver biopsy and string of blood tests revealed that the medication had damaged my liver. I decided to take myself off of MS therapy almost a year ago so I could live as normal of a life as possible. It almost seems like a waiting game now.


Will I wake tomorrow able to feel my legs? If I close my eyes, when I open them, will I still be able to see? Will I be able to feel the touch of my boyfriend? Will my college degree be of any assistance when I've lost cognitive function?


Terrifying, I know.


So, now what?


Two oral medications have been FDA approved, and are available for use.


Gilenya is proven to reduce relapses and delay disability progression in patients with relapsing forms of MS. Available in 0.5 mg capsules, this medication is said to reduce relapses by 80% when compared to a placebo and by 52% when compared with interferon-beta-1a. With any medication, there are risks. Gilenya has a risk of bradycardia which is when the heart rate increases rapidly. Physicians are instructed to monitor patients six hours after the first dose to look for bradycardia. An increase in infections, diarrhea, back pain, headaches, and elevated transaminases have been reported, as well.


Aubagio is the most recent medication to be approved. Administered orally once-a-day, it has been said that those on the medication had a 30% lower rate of symptom relapse compared to placebos. Common side-effects include diarrhea, nausea, and hair loss.


Knowing that I will, one day, have to be placed on an MS therapy to live a quality life, I hope my options point to the oral medications. However, until the medications have passed their risk evaluations (typically, five years), taking the medication(s) may be an option.


For those newly diagnosed with MS, the best advice I can give is to be an advocate of your own health. Coupled with the information you receive from your doctor, you need to understand the disease and what it is doing to your body. Only you know what is working and what is not working. Only you know if you feel right while on the medication. Ultimately, only you can decide what is best for you.


Do your research. It's a scary, unpredictable world when enduring MS. The more knowledge you have, the better off you'll be. Never be afraid to ask questions. Ever. The more knowledge you possess, the more powerful you'll be. Sadly, my lack of knowledge and avoidance of asking questions or admitting I was in pain resulted in damage to my body that I cannot reverse. Having MS doesn’t mean that we have to lay down and allow the disease to take over. Having MS means that we are strong, courageous, and powerful beyond measure. Perhaps, these new oral medications will be the beginning of lives so many believed to be lost?

Stress and Multiple Sclerosis

Stress is an inevitable part of the human experience. Whether the stress be good or bad, the hard truth of the matter is that it will affect those with Multiple Sclerosis in the same way... 

Poorly.

Those with MS will learn that stress is a damning factor in the diagnosis. If one can learn how to deal with stress, not only will quality of life be improved, but brain lesions could be prevented or slowed (Boyles, 2012).

The most important factor of stress management is the ability to focus on what one can control. Let's face it - life throws curve balls constantly. However, we cannot be in control of these curve balls all the time. Sometimes, we strike out. Other times, we may hit a home run. What needs to be focused on is the ability to focus on the stress in which can be controlled - or the ability to hit a home run.

Foley (2012) explains that some of the stresses with MS include:

* diagnostic uncertainties
* unpredictability of MS
* the invisibility of some symptoms (which can cause people with MS to feel misunderstood by others)
* the visibility of some symptoms, particularly newly emerging ones (to which others may react

* before the person has had the time to adjust)
* the need to adjust and readjust to changing abilities
* financial stress and concerns about employment
* the presence - or possibility - of cognitive impairment
* loss of control (coming and going of unpredictable symptoms)
* the need to make decision about disease-modifying treatment and adjusting to the treatment if it is chosen
* other stress-related instances within life 

So, how can we cope with stress? Stachowiak (2007) explains:

Social Support: When a relapse occurs or symptoms worsen, you may need help to get to your doctor's office, fulfill your responsibilities or just make dinner. Cultivate your network of friends and family. Keep close ties with the people you can depend on. Let them know how important they are in your life. When you are feeling good, try to help them. 

 

Relaxation: Relaxation is the best way to combat stress in your body. When you are under stress, your body releases certain stress-related hormones. By relaxing, you can reverse this process. A breathing technique known as the relations response has been proved to reverse the effects of stress in your body. You can also learn mediation, yoga or gentle stretching. Anything that relaxes you is great - a lukewarm bath, candles, music or whatever works for you.

A book I was given by my brother taught me how to meditate. It is imperative to understand that meditation takes practice and patience. Most times, it is difficult for some to grasp and can be quite frustrating. It took me nearly six months just to have the ability to clear my mind. Even now, after three years, I still find myself having difficulties meditating. However, meditation and yoga have helped me in more ways than I thought.

Planning: We don't like to think about times when symptoms worsen, but having a plan in place will make everything go easier. Think about what would change in your life if you were having a relapse. Who would take you to the doctor? Who would watch the kids? What about work? Go through your typical day and consider how you could deal with each complication. Talk to the people you would need to depend on before you need them. Set aside a little 'relapse fund' for takeout, massages, and anything else you might need. Creating a relapse plan for MS can make a big difference when things are difficult.

Regardless of the stress, regardless if it is good or bad, one with MS must always remember that it will - in one way or another - work itself out. Though it is in human nature to stress, those with MS need to remember that stress can damage more than just an emotional or mental state...

References:

Boyles, S. (2012). Stress management may prevent MS brain lesions. Retrieved July 26, 2012, from http://www.medicinenet.com/script/main/art.asp?articlekey=160193

Foley, F. (2012). Taming stress in Multiple Sclerosis. Retrieved July 26, 2012, from www.nationalmssociety.org/download.aspx?id=153

Stachowiak, J. (2007). Stress and Multiple Sclerosis. Retrieved July 26, 2012, from http://ms.about.com/od/livingwellwithms/a/ms_stress.htm