The More You Know…

Written by on June 20th, 2017 – 19 Comments

As I approach the mark of my 1-year anniversary diagnosis date, I can’t help but reflect back on the emotional rollercoaster I experienced when I was first diagnosed. Anyone who has been diagnosed with MS, you understand the feeling of defeat.  You probably thought, or are still thinking, your future was taken, maybe you’re planning your new future, as I was.  I would sit and think what my life would look like years from now.  Would I have kids? Would I be alone or married? Will a friend take me in if my parents are gone? Will I live with my brother? All of these thoughts would run through my head because of what I knew about MS (which wasn’t much). I constantly asked myself.. and at times still do, “Why was I diagnosed with something that has no game plan?  Something that has no answers? Something that even medication may or may not be able to control, something that I can’t control.  I thought all of this; I cried about all of this, I knew MS to be debilitating and that it was only a matter of time.  You don’t hear about MS like you do other diseases, a lot of people are uneducated, including doctors, because it’s such a complicated disease when you’re dealing with patients who are all completely different.   I couldn’t continue with these thoughts, periodically fine, but not every day.  I needed to take control, look this monster in the eyes and say “HOW YA’ LIKE ME NOW, MS!!” Over the last year, I have learned a lot about this disease.  I have learned about the stem cell researcher going on in Canada (Ottawa), Mexico and I believe in the U.S.A as well.  The MS Society has posted about it and if you Google it, you will read not only about the research, but testimonies of those who have gone through it.  It has not yet been FDA approved, they are still in research stages BUT , is that not AMAZING news!!  I had no idea about the research being done so this gave me the kick in the butt I needed to keep reading and to find more answers.  Anyone who knows me, when I set my mind on finding an answer, I find the SHIT out of that answer lol.  Information was out there, I just needed to locate it.  We live in a BIG world, just because something may not have been known in Ontario or Canada, doesn’t mean it’s not out there, right?!  So, off I went on my inter-webbing journey.  I’ve said it before and I will say it again, get your support system involved in your health plan and learn together!  I started my blog being completely honest that you’re going to hear A LOT about food and nutrition and you will, it was through my Google searches where I stumbled across the Autoimmune Paleo Diet for MS which actually spiraled into learning it’s also great for other illnesses.  So much information to be found out there!  I will say, just be cautious of the sources.  As great as Dr. Google and Naturopath Joe Blow sound, I would probably lean more towards some scholarly sources.  Before I get into the food based blogs, I have some news to share.

After a year of starting to learn ways to take control of what I could and determine how I was going to tackle this, (diet, lifestyle, and positive changes) I am happy to say that my 1st follow up MRI showed absolutely NO changes.  No new lesions, no lesions have become bigger AND some of my symptoms have subsided.  My feet used to constantly be numb and now that comes and goes periodically (although my days of wearing all my fabulous heels are over)  the tightness through my mid-section is MAYBE once a week, IF that, I haven’t had a limp in months, I haven’t experienced “drop foot” in months, honestly everyone, HANG ON TO HOPE! Will this continue to go well?  I don’t know, but I have hope.  Do I have shitty days even though I see improvements in my symptoms sometimes? YES.  Do multiple symptoms present themselves out of nowhere, YES.  I can’t dwell on that though.  You roll with the punches and ask for support as needed.  I listen to my body and what it needs and I fuel it with nutritious, organic and hormone free foods.  Serious side note- read about the changes in use of and the AMOUNT of hormones, pesticides etc that have developed since the 40s (to throw a year out there) to today.  It’s incredibly eye opening (future blogs to come regarding all of this good information).  I have seen firsthand, how the AIP diet has helped manage my symptoms and I know what I feel when I eat off course.  Maybe you are reading this and haven’t been as fortunate as I, maybe you had great news in your first few years and then at a point, you were told of new lesions or lesions that got bigger…hang on to hope!  When I saw a neurologist for the first time after going through my MRI scans he said he wouldn’t be surprised or question if I showed up in a wheelchair the next day.  Excuse me? Me? But I just walked in here?  How do you even digest hearing something like that?  So I understand hearing something negative after the initial diagnosis, sucks.  You can’t stop the fight though.  You can do this and you can still find ways to manage this, perhaps even overcome this one day!  If you do use assistance, you owe it to yourself to keep fighting.  Your life isn’t over as long and you’re living.  Your days look different now.  Easy for me to say, I know.  Dr. Terry Wahls was in a wheelchair from her progression and now she is more active than I am!  I ride a stationary bike a few times a week to keep moving, I take walks with the dog, and I have a hand gripper that I use for my left hand. I tend to use my right more, not only because I am right handed, but because the sensation in my left hand has been weak for some time.  Using the “hand gripper” helps me make sure, I am still working those muscles, stimulating blood flow etc. You are the only person your body has to help it.  Control what you can and karate chop the rest.  Get educated!

As I mentioned in my previous blog, one of the hardest things someone with MS or any internal illness, is having others remember.  Lets not forget how tough it is to explain these things to others, to help them understand.  I have subscribed to Everyday Health, specifically for the MS articles, and this was an interesting read.



Note: The MS Society does not approve, endorse, or recommend any specific products or therapies but supports individuals to make their own decisions. 

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19 Responses

  1. Roz says:

    Very motivational……….So proud of you, not only how your handling things but the fact that you work so hard to reach out and educate others………….Amazing…………

  2. Meghan says:

    Very touching and inspiring. Thank you for taking the time to write your story. I’m also approaching the 1 year mark with MS. It’s hard to stay positive with all the uncertainties and fears. It helps to know we’re not alone. Thank you again 🙂

    • Ashley M says:

      Hey Meghan!
      I know it is, I do. And I could blog about all the complaints, and crappy moments and this doesn’t work, that doesn’t work bla bla bla, and at times I will because its a very real part of my new life, BUT that doesn’t help me or anyone else. What’s helps, is a kick in the butt or an extended hand to get you up and fighting and stories that give hope, comfort and hopefully some giggles from time to time. We have no other option but to strong. I know you are a fighter! Meghan “The Machine” (insert last name) has a good ring to it, no? Find a reason every day to be thankful , write down all the good things that happened that day and read them over when you’re having a bad day. It could be walking a bit longer than the day before, it could be getting outside to garden, maybe a symptom feels better, whatever it is! there is ALWAYS something. Don’t give up on yourself. We have a long road ahead, we need to make sure we have a good balance of tears and smiles. And Hey! Look at what you’ve accomplished this year. You found this blog, so you are clearly taking control and doing some research, you found ME! HUGE BONUS! lol jk BUT you’re moving in the right direction and I am sure you could list many other things from this past year that you have done 🙂

      In your corner sending positive vibes as always.

      • Meghan says:

        Hi Ashley 🙂
        Thanks for your quick reply ! I see you’re an unbeatable optimist! If I may ask, and feel free not to answer, how do you deal with the fears MS puts in our minds. I’m dead scared of one day being incapacitated… not being able to walk for example? I’m not keen on seeing a psychotherapist, I much rather talk with someone who’s walking the same path as me 🙂

      • Ashley M says:

        I am certainly not unbeatable, ask my boyfriend who sees me feel defeated periodically! I just find the inner champion to push through as much as possible and writing and talking with people like you, helps more than you know. All I knew about MS was that it was debilitating. I would be wheelchair bound, fed, needing 24-7 care etc. I had never been so scared in my entire life when I got this news. But now Meghan, doctor’s are seeing more and more people who are staying in RRMS stage, more people who have been living with MS for years who did not progress to the point of complete dependency. Is it the new drugs that are coming out? Is it that we have all of this new information about diet and lifestyle that affects MS, is it that we now know of things that are proven to cause or aid in progression? I don’t know, and it doesn’t matter. What keeps me going everyday is knowing that a new understanding and new management techniques of this diseases have come a LONG way. Reading stories of individuals who were once in a wheelchair watching their lives pass by and are now up and walking. That’s HUGE hope. I look at it this way, Meghan. Life is unpredictable for everyone. Yes for us more so, but our future is not “inevitable” we have a higher chance of ours changing, the way our days look now may change, but being completely dependent 24-7, on someone, is not inevitable. Others have not only recovered from continuous progression, there are people who haven’t progressed and are still in the RRMS stage, 20-30 years later. So I can’t live every day scared. I can have days and moments to be scared for sure but I can’t go about my days, everyday, like that. I deserve to smile, I deserve to have fun, I deserve to live my life. I owe it to myself. If I let this diagnosis completely change me and take away my happiness, I let it win and I can’t do that. Life can change in a split second for someone incredibly healthy. You never know when or why, but it can. Freak accidents, workplace fatalities, all of these traumatic, unexpected things happen to people unfortunately, everyday. So as scary as it is to think of what your future could potentially hold for you, everyone could, everyday. Once we leave the house for work or a trip anything could happen to any one of us. That’s why we have to live in the now and enjoy our days and what we’re capable of doing. Especially for someone like us who know we have a situation on our hands that we have to manage and help prevent the nasty possibilities. We will have our challenges along the way, we may periodically need assistance or devices to help us through our day and yes, that’s not something everyone has to think of, but you can’t only focus on the negative, you could very well be one of the lucky ones who remain somewhat stable. So all of this energy you have to be scared of progression, make it a point to put that same energy into learning ways that can fight against it. Read the stories of those who are doing well, read about Dr. Terry Wahls and her “recovery” story. Get inspired and find your hope. Doctors know more now about MS than before. Years ago, Doctors told their patience’s not to exercise and allow their body to rest. Now, doctors are saying to definitely exercise as much as possible, when possible. Keep up your strength, build your muscles, get your blood flowing and in turn, your also getting your mind working. I don’t want to come across like this unicorn with rainbows and butterflies up her butt, I know this sucks! BIG TIME! I just really try to stay focused on today and learn how I can help myself to hopefully be one of the lucky ones I have read about or have talked to that are doing well. I let myself have bad days and bad moments, you have to get it out but than you need to pick yourself up and keep going. I see a naturopath, I take medication 3 days a week (which I don’t like and MAY potentially stop and focus just on the Autoimmune Paleo Diet Dr. Wahls recommends) and I make sure to do things I enjoy, get outside and be around friends and family. I started a garden so I could grow my own organic fruits and vegetables, take all my vitamins for brain and gut health etc. There is so much information out there on how autoimmune diseases can be better managed through diet and lifestyle and I think that’s how I found my hope and positive outlook. I went from thinking there were no answers, no information and my days were numbered to realizing, this is no longer the case and that I was in charge of my life and I was going to find answers and do what I needed to do to help myself. There is no other option. I don’t have children yet, I worry about that. What will happen after giving birth, will I be able to care a child or multiple, be able to play with them, down the road will they have to care for me? Thoughts can spiral out of control! I hated being alone after I was first diagnosed. I just sat and planned my “future”. Who would care for me, would my relationship end, should I end it so he doesn’t have to deal with this.. My God, I cannot and WILL NOT live my days like that especially since I could very well remain exactly as I am now. All of the “what if’s” are not guaranteed to happen. They COULD yes. I could also get hit by a car (knock on wood I never do). I will always acknowledge and talk you through a shitty day, or at times talk about my own shitty day but focusing only on that doesn’t do anyone any good. I found too many negative blogs when I was diagnosed, of people who gave up, complained about everything etc. and I needed to change that. My heart goes out to those that have struggled for years and found nothing helped but it doesn’t help someone like me, newly diagnosed, to get off to a good “I got this” start. I also don’t know what they have done to help themselves? What was available for them, did they work out, did they change their diet and lifestyle to fuel their body and eliminated what it doesn’t need? Regrettably maybe they just couldn’t beat the progression. It wasn’t what I needed to read. I may not progress to that point, I didn’t want to hear it, I wasn’t ready to hear it and it wasn’t doing any good. I’m glad you opened up and started chatting with me, I am more then happy to be a support system during this new path we’re on.

    • Ashley M says:

      I focus on things like this!!

      • Meghan says:

        You’re very inspiring and also very kind to take the time to write your thoughts and visions. I totally agree with you. I’m as stubborn ar they get. MS was a big blow, I never saw it coming. I don’t want it to be the first thing I think about in the morning, and last thing on my mind at night. I have day where I miss who I was before MS. Carefree and “immortal” kind of. Now with MS, it’s as if someone pulled the hand break on me, and now I have to rethink my life. I love how you see things, realistically yet with incredible optimism 🙂 it’s admirable. Which meds are you on? (if I may ask) My neurologist started me on Gilenya in January. So far it seems to be working ok. I still have the numbness in my hands, and the Lhermitte symptom which comes and goes. What are your day to day symptoms? How do you manage? Have you found any tricks that work for you? Did you change anything in your diet? Sorry if I ask a lot of questions 🙂

      • Ashley M says:

        What’s stopping you from living the carefree life you did before? You’re still here and from the sounds of it, still independent and hoping to stay that way? I’m sorry to say but you were never immortal. This diagnosis doesn’t change that, it’s a wake up call that that you need to pay extra attention to your diet and lifestyle and ensure your making time to listen to your body and fuel it what it needs. I’m going to be blunt here Meghan so I apologize in advance but….. you are sounding like a victim, like someone with zero control, that your only option is to lay down and give up and it couldn’t be more wrong! You’re here, so I know you haven’t given up but you owe it to yourself to have fun again, live life and smile. Our mind is such a powerful thing and as corny as this sounds, but I’ve seen it firsthand, a positive attitude can be incredibly healing OR so toxic. I’m not saying “smile and you’ll be all better” but your frame of mind is a powerful tool. Use it to your advantage, rather then against you! That crap ends today!! 🙂 I take medication, Rebiff. I inject 3 days a week and it royally sucks. I have site marks all over my thighs and arms, the injections are starting to hurt now, probably because I’m not changing up where I inject, enough. I have changed my diet substantially. The amount I’ve learned about diet and life style and how it relates to MS and other illnesses, is crazy. I’m a naturopath groupie 100%. How can’t you be? It all makes sense. It’s scary what we put into our body thinking it’s “healthy”. I follow the Autoimmune Paleo diet. I fall off course sometimes but for the most part, pretty strict. I’d like to come off my medication and follow a completely new diet and lifestyle, im just not 100% there yet. Every day the sensation in my left hand is off, almost number. I have mental fog so I feel incompetent at work sometimes, I get mentally exhausted very easily, I get aches and pains in my back and hips, nothing awful. The tightness in my mid section comes and goes. I have it right now actually, it’s really uncomfortable. The sensation in my feet are off today and in my finger tips. Yesterday I also ate off course. I ate nothing organic and drank a fair bit of cider (gluten free). I fell asleep at 3a (just couldn’t sleep) and woke up at 8am . My body needs more sleep and some water! Lol. The day to day stuff I manage what I can. I have a hand gripper to keep up the movement in my left hand. I tend to overcompensate with the right, the mental fog, I ask for meeting agendas or time to get back to people because I know I need to prepare as much as possible or I may not remember. I have been open and honest with my employer. You should to. I didn’t want anything to come across as though I lost interest in my job, or I am incompetent… or anything negative in any way because I absolutely love what I do. They now work with me and support me. In the summer I can’t lay out/ sit out in the heat and have drinks with everyone if it’s really hot. My legs get weak, and I start to feel nauseous BUT, is that such a huge deal? If Lake Ontario was cleanner I could jump in, cool off drink water and carry on. But I hang out for a bit and then head home if/when needed and I’m ok with that. Diet and lifestyle are huge!!! I eat organic and hormone free meats/poultry as much as possible. Our injected, chemically sprayed foods are being looked at more closely in being blamed for soooo many things which means, We have a chance to heal ourselves somewhat by changing things! The other day I came across the “class 9″ prohibited for cosmetic use” chemicals in Ontario, some of what are on the same list of chemicals farmers are still allowed to use (for weeds, insects, fungus etc). So we can eat it, we just can’t put it on us? apparently, it causes enough issues to ban for cosmetic purposes, but ingesting it showed no issues. Lol wtf? Research studies have shown the negative effects our current western diet and lifestyle are having on us. The rise in cancers, mental illness, etc. It’s scary but empowering at the same time because it says we can take control back. A research study showed the path we are on, by the year 2020, 1/2 children will be born with a form of autism. This from a traditional Dr. who perscribed medication, has MS herself, had the best meds available, completely turned to food and lifestyle and has changed her thinking. The only thing that worked was changing her diet. Dr. Wahls. Stay optimistic , Meghan. You owe it to yourself and you deserve to still have fun. There is no reason not to! I hope I answered all your questions. Ask away, that’s why we’re here.

      • Meghan says:

        Wow you’ve read up on a lot of things! I’m in awe lol 🙂 I definetely don’t want to be a victim. I want to believe that there will be more and more successful advances in MS research (maybe one day a cure). I want to believe that I’m living the low I was meant to live and that MS is a part of it, not an obstacle. Have the meds helped you in any way? Did you see a difference before/after? You’re very strong, body and mind 🙂 Thanks for all your advice!

      • Ashley M says:

        THERE IS IT!!! I knew this girl was in there somewhere. I LOVE everything you just said! more posts like this, Meghan! “I don’t want to be a victim, MS is part of it and not an obstacle” SLOW CLAP my dear! KUDOS GIRL! If you don’t want to be a victim, you won’t be! Its ok to have limitations, and need to listen to your body and take break or whatever it is. Is that really so bad?? We haven’t been given a life sentence or even a guarantee of our future so live the life you love, girl!! (just more healthy!! lol) New information is coming down the pipeline more so now than ever before! Stem cell research for example, is almost being call a cure, they have seen incredible results from this. Researchers are still in stage 2 of research though so its not readily available and it is quite invasive so its those who are progressing and show signs of continued progression that are eligible for it. (for now) To be honest, I don’t know if its the meds or the diet change. I will say the meds made me sick for the first few months and continue to periodically. Like I have the flu, really bad. Sweats, fever, headache, aches, nauseous and SOMETIMES I find my symptoms heightened the days I take my meds. Once I become strict with the AIP diet and am really truly using food as my medicine I would like to come off the medication. I will work with my doctor to slowly come off the meds, see how it goes with JUST the diet change and go from there. I want to talk to the Meghan that just wrote that positive post, more often!

      • Ashley M says:

        The biggest thing I try and focus on, since this diet change is challenging and doesn’t happen over night, is hormone-antibiotic free grass fed meats/poultry and organic produce. I started my own garden in hopes of saving some money. Get all of that crap out of your diet

    • Bernadette Kerr says:

      I live in Norfolk County where the cases of MS are quite high. I don’t have MS. But 3 years ago I was bitten by a tick and after 5 months started getting really ill. I went from an active long distant runner to unable to walk or get dressed. I had numbness, tingling, muscular stabbing pain, aching joints, blurred vision, tinnitus, balance issues, brsin fog and on and on. After getting no suitable answers, I had my testing done in Florida and California where the results came back positive for Borrelia (Lyme Disease).
      About a year ago my nephew in NS had his wife contact me. She was diagnosed with MS at 19, she is now 41. She went to NY to see a doctor who ran her blood work to CA (where they conduct the most comprehensive Lyme testing). After a week she met with the doctor when the results came in. He said I have news for you, “You don’t have MS, you have Lyme Disease”!
      I find it may be something you could check into.
      The serological testing in Canada is unreliable at best. So getting tested outside the country is probably worthwhile…to rule Lyme out or not.
      Lyme disease is call the great imposter…it mimicks many other diseases.
      I hope this info is helpful to you.
      Thx B.

      • Ashley M says:

        You’re right! the symptoms of MS mimic Lyme disease and numerous other conditions thank you for helping educate others via my blog! I wrote in a previous post to get second and even third opinions as I did because it’s hard to diagnosis without spine and Brian MRIs and even if those are questionable, a lumbar test is done. I have 2 MS specialists , I saw a neurologist and than my GP of course. I was hoping for Lyme disease and I DO NOT at all mean this is a walk in the park, I was just hoping it was anything but MS because MS has no real cure or even answers for that matter. I’m sorry to hear you were diagnosed with such an awful disease and hope now that you have answers, you have found a way to start managing it. I heard early on of a few people who were misdiagnosed with MS, started medication but because they were misdiagnosed, the medication debilitated them. The individual didn’t see a specialist or a neurologist and was diagnosed by their GP with either 1 or no MRIs at all. So I was definitely cautious. I’ve never had a tick on me let alone been bitten but I was still questioning the possibility. Thank you for sharing your story. Many people have been misdiagnosed and it’s important for anyone to rule out all possibilities. Cheers to you and wishing you better days ahead!

  3. bmgalway says:

    Ashley, I love your outlook and I’m so delighted you are putting yourself out there for others to learn and embrace your positive energy. I’m loving reading your responses! And any day you need someone to “kick your butt”, I’m your gal! Love ya lots.

    • Ashley M says:

      Thank you! I’ve now clicked the box now so I get emails when someone replies to any of my posts. I’m happy to see people engaging in conversation.

  4. Roz says:

    it sounds like you are truly having an impact and helping people to see that their lives are by no means over. You are doing exactly what you said you would do. Keep strong and positive warriors you will make it……………..

  5. Ashley Z says:

    Hi Ashley, I have finally made it to the blog as my vision has finally cleared up enough to allow me to be able to have more screen time. I first must say how inspirational your posts are. It really helps being able to read about someone’s journey and just knowing the similarities yet differences with us all that have MS. As for my journey so far it has been quite a roller coaster from the beginning but it’s been more of a smooth ride the past few weeks other than my issues with the vision. Before being officially diagnosed, I honestly never knew anything was wrong because I would always brush things off because that’s just who I am. It was not until I woke up one day feeling as if I was going to have a severe sinus infection coming on that I thought I caught from a friend that was over visiting just the day before and a few days earlier in the week. I went through an entire work day with the awful sick feeling becoming worse. I remember driving home from work and just thinking this is just awful. So I called a friend to come over to take care Luigi (my little Chihuahua) because I was just not feeling like myself. He stayed the night as I just didn’t feel right and I am so thankful he did. It wasn’t until very early the next morning that I screamed out for him. There was an outrageous ringing in my right ear, my entire right side was tingly and numb, and my speech was off. We immediately thought I could have been having a stroke. I remember facetiming my mom as she was living in Colorado and I was in Arizona. At that point my friend called 911 on his phone. When the ambulance arrived they refused to take me to the hospital as they thought I was too young to be having a stroke and said it was just a sever sinus infection and my equilibrium was off. They said for me to wait a few hours and if I was worse then to have my friend take me to the hospital, followed with a prescription from the RN for a antibiotic. So I waited but it only got worse. My friend then rushed me to the ER where they thought I was having a stroke as well and immediately admitted me to then wait 24 hours to even have an MRI. It was just awful, absolutely awful. I was getting worse by the minute. I could barely walk without assistance. I was extremely swollen at this point. My mom took a flight out that night and when she arrived, it was like I was a different person to her, I didn’t look the same and I could barely speak. After the first MRI the next day, they were still thinking a stroke and then added another MRI… still thinking a stroke at this point. Yet they were wondering how a 29 year old could be having one. It wasn’t until the third MRI when they began to see lesions. At this point I had 3 MRI’s, a CAT Scan, an Echocardiogram to check my heart, and then they decided it was time for the 4th MRI and then a lumbar puncture. It was a few days later when the results came in from the LP and it was confirmed to be MS. I had spent 10 days in the hospital and then 4 days in rehab as I was determined to get out of there. I then spent a week at my condo with my mom and she drove me back to Colorado where I am now residing. From the moment I left rehab I was still having balance issues and serious double vision as well the numb and tingling feeling one the right side was just outrageous. When I arrived back in Colorado I only lasted a couple of days before I was back in the hospital because my symptoms worsened. It was then that I decided I really wanted to take a holistic approach to this new diagnosis. At that point in time I only knew how debilitating the disease can be but I was not going to let it take over my life especially from the side effects of the medications. I had break down after break down thinking I couldn’t do it but I wouldn’t allow it. I saw a neurologist in Colorado that tested me for the JC virus and when I found out that I was positive with a considerably high level again another breakdown came and again I was even more determined to go a natural because of the virus and the thought of being on one of these drugs and contracting PML. I immediately gave up gluten and dairy and the list just continued. I started going to a naturopathic doctor that has made such a difference in my life with the supplements she has put me on. Not only this but I have been working with a Chiropractor that specializes in Neurology and cold laser therapy. I have been keeping up with reflexology, acupuncture, and ionic foot cleanses. I try to keep a regular exercise regime and hope to start Pilates soon. With all of this and my determination to be as close to as “normal” as I was before is why I believe I am where I am today. Along with following asleep to meditation music and trying to meditate as often as I can, I also try to keep a very positive attitude and tell myself everyday that I am healing and I will heal. We all just have to believe that we can help ourselves as much as we are determined to do. Don’t give up warriors. Stay positive even though it’s easier said than done.

    • Ashley M says:

      ASH!! thank you SO much for sharing your story and WOAH! what a story it is! Isn’t is so unreal how 2 people with the same disease can experience such incredibly different episodes, side effects, symptoms.. whatever. This is exactly why with the hundreds of thousands of those diagnosed, its so hard for doctors to find answers and why it’s so important to take charge of your own health. When I first started reading your story I thought “uh oh… is this MS?” Feeling sick, sinus infections etc.. could it be Lyme disease, or something else”? AGAIN, perfect example of why getting a proper diagnosis (since MS mimics so many the other things) is so important. seek second and third opinions if needed. As I kept reading about MRI after MRI and your Lumbar test, I knew it was safe to say you have the answers you need. I talk about misdiagnosis and the MRIs and Lumbar tests in previous posts and how important it is to be sure. I commend you for what you’ve overcome and what you will continue to overcome. The beginning your journey was without a doubt, extremely scary, not knowing what it was, being told “its a sinus infection stay home” Just awful. Thank you for introducing the subject of JC Virus and PML. Its not talked about a lot, I certainly don’t know much about it but if someone reading this had also received the same news, they now have you as someone to communicate which is AMAZING!! I know how scared you were to hear this and felt like it was one thing after another. you are absolutely right, you were entitled to be angry and sad and it is 100% not fair. Look at you now though!! I love that you have taken the holistic route, there is FAR to much information out there on the benefits of diet and lifestyle, not to. I am on meds as you all know, but ideally will be coming off them in the near future and focusing strictly on holistic living. The ending to your blog is how I would like to start my next, discussing my team of health care providers, things I feel helps or perhaps didn’t help. Please keep sharing with me! Stay positive and in charge. It’s a long road ahead but a good playlist (aka positive attitude) makes every road trip just a little bit better. Cheers!

  6. Marlene N says:

    I was diagnosed in 2010, after years of going to doctors that did not know what my problem was – tightness from the waist down, numbness as well, right foot weaker. I found a wonderful MS neurologist in Hamilton, he ordered an MRI of my head and spine and found lesions. I have secondary progressive MS. I had signs of this disease through the years, falling down, tiredness, etc. But, I maintained a full time job from graduation until I retired in 2001. I have a wonderful husband, and we have been married for 48 years. I am the youngest woman in the retirement community we moved to, after we sold our condo. I can no longer prepare meals, went from a cane to a walker, for balance. I remain focused and believe there will be a cure or treatment for secondary progressive MS.
    It was wonderful to read all of the positive comments above, so keep smiling, walking, and remain positive, okay.