CHANGE MS HISTORY: why the non-for-profit was started:
Information is the most valuable commodity in the world; the lack of information I received is what started me on this journey to start CHANGE MS. What if the cure was right here in front of us and it’s more about control than a cure? I feel if more people were empowered with the knowledge needed to help them live healthier, they would choose better lifestyle choices. What if your fate was in your own hands, would you change your lifestyle to feel better?
You cannot get mad at our healthcare system and what society does not understand. Hopefully, one day we will live in a world that actually cares about people and our healthcare system was actually about health. I am not a doctor or a healthcare professional; I am simply one person who would not settle with the same old outcome. I decided to educate myself on my condition and wanted to know all I could about MS and how I would move forward with what was now to be my life.
I could talk about MS and the all of things I’ve learned all day but I have trouble putting my experience on paper. My goal is to tell my story without boring you, and inspire others to fight for their health by exploring all their options. This website and this cause is not about MEDS vs NO MEDS.
I have noticed the battle between these 2 differing viewpoints amongst Facebook, blogs, and other social media. It seems counterproductive to have a strong opinion without being open to listen to others, and I choose to have a non-judgmental approach. This journey should be more about educating yourself and being proactive toward your symptoms to feel the best you can. It is about understanding the body and why it may be acting a certain way and how you can feel better. My thoughts: We all have MS and we are in this together. After my research, I choose the homeopathic way. I wasn’t convinced that I only had 3 options of prescribed medication, from which I had to read up on and choose which one worked best for me. The low percentage of it helping coupled with the poor side effects scared me more than MS did. I felt like crap but didn’t want to feel any worse. So I got side tracked and began to ask the questions WHY?
Road to Diagnosis
I have experienced most of the bad that comes with a diagnosis of MS: Numbness, tingling, extreme fatigue, spasms, headaches, depression, blindness (optic neuritis), brain fog, and balance issues, coordination, and tightness in the mid-section (MS Band or MS HUG). Some patients have it worse, so I always stayed humble and appreciative. The diagnosis of MS was a long road for me (most of the reason was on my part for being stubborn and not visiting the doctor right away). Officially I was diagnosed in early 2012, but looking back my symptoms began early 2009. My right hand went numb; I didn’t think much of it and thought I had hurt it at work or the gym, but there was no pain only numbness which I thought was odd. Sometime had passed and it eventually subsided and didn’t bother me. Eventually it happened again but along with the numbness in the right hand, both arms became sensitive to the touch and extremely tingly.
I continued to wait to see if it would improve; however, the tingling got worse and I noticed my feet became numb so I finally made an appointment with a reputable neurologist. Right off the bat he mentioned Multiple Sclerosis, I didn’t know much about it and kind of brushed it off, never giving it much thought or concern. I’m not sure if it was denial or just the way that I am, but no matter what it was I would be ok or make it ok. Participating in sports and raised in the family business helped my worth ethic and ability to fight through conflict; you don’t call in sick! You tape up, shut up and never take yourself out of the game! I have always kept that attitude and it helped me a lot moving forward through this journey.
First two things the doctors checked was my blood, because low B levels can cause numbness and tingling, and an MRI of my brain. My B levels were good but the MRI came back with white matter in the images and lesions were visible. He was convinced it was MS but unconvinced, I opted for a second opinion. I did not know much about MS, but I did know someone who had it so felt compelled to speak with her. She pointed me to a MS specialist in our area and the testing continued once again. The new doctor was great and very informative and ordered further blood work centered on vitamin D levels and a second MRI was for my spine.
She as well had high suspicions of MS and the blood work came back with my D level almost nonexistent at a level 4 coupled with multiple lesions on my spine. The percentage of my diagnosis grew and as sure as everyone already was, I still needed to be certain. The only conclusive proof was to have a spinal tap and thankfully I found it to be a quick and painless procedure: the hardest part was to lay still afterwards for an hour or so. The test came back positive and the final diagnosis was made: I had MS.
Diagnosis: What you can expect from MS
Even though I had been dealing with symptoms the whole time nothing can prepare you for the official words of your diagnosis. For me time stopped, the room became quiet and everything became slow motion. You’re not sure what to feel’ it’s like every emotion possible hits you at once. Fear kicks in, you get scared, sad and angry. I looked over to my mother who has been my rock this whole time and it was as if her whole life just crumbled and she broke down into tears. We didn’t know much about MS and the stories my mother knew of ended badly, so she immediately expected the worst. Time began to tick slowly and all I could think was, now what? The doctor was insightful and gave me 3 binders of reading pertaining to 3 different medications I could possibly take for MS. In addition to that reading, the doctor gave me a few folders to help describe what MS is and what I should look forward to experiencing.
I was told to go home read up on the medication and choose the one I thought was best for me (why is making this decision up to me; I am not the doctor?). The elevator ride down from the doctor was quiet and I was still trying to process what just happened; my mother was still in tears and I couldn’t bear to see her so broken. Now I had to go home and tell my father and my brother. I wanted to be strong for her… I wanted to be strong for my family… I wanted to be strong for my friends. I tried in my own way to cheer her up and took her to her favorite Chinese restaurant to eat. My mother mentioned during dinner that she saw one single teardrop run down my face when I received the news; I didn’t want to give anymore tears to MS I replied at dinner. How could we eat at a time like this you must be thinking? I am so glad we did because the smoke settled and we began to weigh out our options. I would then go home, break the news to the family, and start reading my literature and educating myself on what was to be my new life.
Life after Diagnosis: Thirst for knowledge
I was giving a few weeks to make my decision as far as my treatment choices. I went home and began the next part of my journey. Having a name and a cause of what I was going through, I was eager to read the information that was provided, and more importantly became obsessed with answering the question of WHY? I read the pamphlet describing Multiple Sclerosis and took some valuable notes. Then I read the binders on the medications and that’s when I began to scratch my head. The side effects scared me more than MS did. I felt like crap but didn’t feel as bad as the side effects sounded and had no interest in feeling worse; even if they claim to be “for my own good”. My stubbornness kicked in and I wasn’t convinced taking these medicines was the plan and took my notes and hit the internet (I read…read and read). The yearning to know all there was to know about my new reality was like nothing I have experienced. I couldn’t stop; the anger and sadness turned into fuel and motivation to learn and educate myself. There was no good or bad article to read if it was MS related. The MS blogs confirmed my suspicions to all the nasty side effects of the prescribed medicine to be true and I came across some useful information by cross- referencing my data and making sure I was looking at unbiased research. Don’t get me wrong, I wasn’t against the medicine, I just wanted to know all the facts before I made my final decision. I was never the type of person to take things at face-value and believe there is only one way.
I contacted my friend with MS again and she confirmed my concerns, having gone through all the side-effects of the medicine for years. She talked about her lifestyle and how she took herself off her prescribed medicine, feeling the best she had in years. She recommended me to a local naturopath and I jumped at the chance to see her. The naturopath was great and had experience with MS patients in the past, confirming all the information I researched. I came prepared with many questions, having done my homework. However, she confirmed through controlling inflammation, you can put MS into remission. This sounded like a great theory but I would have to make drastic changes: no gluten, dairy, sugar, processed foods and drinks. And perhaps the largest lifestyles change for me: alcohol.
So, just cut all of that out of your diet and eat as clean as possible; sounds easy don’t it? Well, being a fat Italian kid your whole life you can imagine this sounding like the end of the world. Did I mention we own one of the best tasting pizzerias in the country? Yes, this should be no problem (SARCASM). I left that naturopath with more useful information and continued my journey for knowledge. I went home and started my lifestyle change immediately with the recommendation of another doctor to do a 21 day cleanse. I started leaning towards the decision not to take the MS prescribed medicine (was that even an option?). In the end it was up to me, but the decision was still tough, the doctors and my family wanted me to go on medicine right away. The few people I met and talked with on the alternative side said there are some changes you can make that would help. I still felt unsure and went to my next appointment with my neurologist with a load of information and questions. I was weighing my options and I wanted her opinion regarding my research and deciding to pass on medications. She was hesitant but agreed she would monitor me closely and support my decision. So I made the choice to not start the medicine right away. I didn’t know if this was a permanent decision, but I was dedicated to make a difference in myself: for myself, or maybe even to prove the doctor wrong.
I decided to keep my diagnosis a secret with a few members of my family knowing and not even a handful of friends. I didn’t want the sympathy or any negative attention that came from such news (in the back of my mind I wanted to know if what I was doing was working and eventually bring something positive to the table). I hit the ground running first starting with the cleanse: cut out all gluten, dairy, processed foods, began introducing green smoothies, was eating as clean as I could, and added a vitamin regimen (which consisted of a pro-biotic, multi-vitamin, 10,000 units of D a day, B, C). Slowly but surely I started to see and feel a difference. I was losing weight, my symptoms were subsiding and most noticeable was my energy increased a lot. I did cheat though, and alcohol was a hard thing to give up. I was a weekend warrior and enjoyed a night on the town with friends or family.
The year went by fairly quickly but it wasn’t without a few hick ups. It seemed the better I felt, it was easier to fall off my routine. My first major flare I became severely numb from the neck down with a week-long infusion of steroids to calm the flare and settle the inflammation (it took some time to recover from that one). Not long after that flare, I made a preventative eye doctor appointment due to hearing about optic neuritis. Well, perhaps making that appointment was a premonition because I left the doctor’s office Friday with a clean bill of health, only to wake up Monday and was blind in my right eye. It was extremely hard to keep my composure waking up half blind and I did feel discouraged that morning. Even though this was a major setback, I had made so much progress in my health with my recent lifestyle changes, I wasn’t discouraged enough to turn to MS medicine. Approximately one month later my eyesight retuned and I was reenergized to move forward in a positive direction with my health.
It just goes to show you how quickly things can change and my neurologist became skeptical with my decision and began to press me harder to start treatment. In my eyes, I wasn’t ignoring MS or living as wildly as I once did. MS was my wakeup call: I used to eat whatever and whenever, stay out all hours of the night, worked countless hours all week and no cares of what I ate or drank. I continued reading every day and keeping up on new treatments and therapies; I started to understand and learn about inflammation and the damage certain food and stress can cause internally in your body. The better I was on my lifestyle plan, the better I felt, and my MRI’S now showed my lesions shrinking, with some disappearing. As good as you feel you have to keep in mind, you are not cured; you are managing the illness and winning.
Inspiration through Education: Mentors and Pioneers of MS
A friend of mine who was into clean eating turned me onto 3 great food documentaries. For over Knives, Fat Sick and Nearly Dead and Hungry For Change. They were amazing and really put things into perspective. Scouring the internet every night searching for useful information, I came across a life-changing Ted talk video on yout tube by Dr. Terry Wahls, She is a MD who had secondary primary progressive MS, a much more serious case than mine, and she managed to get herself out of a wheelchair through her research. Her research led her to write and develop the Wahls protocol which is an excellent book that follows paleo principles to heal with the powers of food. Every day, week, month, I found a new pioneer in the field, all of which had MS. Along with Terry Wahls, I found Ann Boroch (certified nutritional consultant, naturopath, educator, author, and inspirational speaker). Ann is the author of “Healing Multiple Sclerosis: Diet, Detox & Nutritional Makeover for Total Recovery” which was the first book that I ever ordered and was extremely informative. Ann also wrote “The Candida Cure: Yeast, Fungus & Your Health.” I found her motivating due to her ability to not only reverse her MS symptoms, but put her MS in remission. Montel Williams was another individual who inspired me and has a huge voice in the MS community. He is a huge advocate for awareness and being pro-active toward your symptoms.
Another researcher and author I found thanks to facebook and very useful is Pam Bartha. Her book is “How to Become a Wellness Champion”. In conjunction with authors, I found stories of MS patients overcoming great obstacles; such as Aurora Colello, who was hit extremely hard with MS has won her battle with MS through diet and lifestyle and is now a successful triathlete. Recently added to the MS scene is Jack osbourne and Chad Vaccarino, a singer and performer, who is following the Wahl’s protocol, being pro-active, and winning the fight as well.
On top of the reading articles, books, watching documentaries, following success stories, I came across a great series provided by The Institute of Functional Medicine.The Evolution of Medicine, The Detox Summit and The Autoimmune Summit. Around 90 videos from educators from around the world including some of which I mentioned. Everyday is a new day to learn something and I still look forward to what I come across.
I get looked at like I have a 3rd eye choosing food and lifestyle as medicine. I think it’s so valuable to your future to look into being pro-active and have an open-mind to all of your healthcare options. I am saddened to think some people will shake their head and ignore this page. I have to learn to not take their feelings personal and hopefully I will reach those hungry enough to want to know more and provide the answers they are looking for. I am simply one person that would not settle for the same old outcome. The people on the front lines that I have mentioned give great hope and show tremendous strength and share the same passion and determination to spread the same knowledge. Their voices are loud, and their message is clear and should not be taken lightly. Be your own advocate, test yourselves and know your own limits!
The hardest thing you may have to do to win in your MS battle is unlearn everything you once knew to be “right”. We are often labeled with a diagnosis according to our symptoms neglecting the root cause. Our health care providers are not trained to treat the primary cause of the problems and simply treat and mask symptoms. How is your body supposed to heal? I do believe your body can heal. I feel MS and most, if not all, autoimmune issues is a perfect storm brewing in your body and after years of stress, poor diet, yeast build up, and toxic overload. One day your body hits it’s breaking point and triggers an explosion. In order to begin the process of healing you have to take proper precautions to extinguish the flames backing them up to the source. The goal of CHANGE MS is to get people to understand what their body is going through, identify the cause of the problem, and focus on getting the body to work for itself and not against it.
I am not trying to reinvent the wheel; I am just one man who has overcome most of the worst outcomes MS has to offer. I am not here to say MY way is the BEST way. I have created CHANGE MS to be a support system and informational tool to help you find YOUR way. What is CHANGE MS? We are a local organization dedicated to improving the lives of those with MS through education on treating your body, inflammation and stress and how to be proactive toward your symptoms to fight back.
Together we can CHANGE MS.
What is to come?
I am going to continue my thirst for knowledge and follow Paleo principles and choose food and lifestyle as my medicine. My goal for this year is to go in-depth with the Wahls protocol book and get my symptoms(which have became minimal) to all go away once and for all. My last flare up was over a year ago; my family had just opened up a second pizzeria location and I take full responsibility for not taking care of myself properly. I was working extremely long hours, skipping meals and I felt my body shutting down but again I paid no attention to these signs and woke up in the worst flare yet. This is why it is important to set limits and listen to your body, it is talking to you. I am looking forward to attack this healthy lifestyle more aggressively, continue to lose weight and feel great. The only side effect of taking better care of yourself is feeling better and who wouldn’t want that?