To be updated soon. I did move to Tecfidera after I began to react to Copaxone. I'm also hydroxychloroquine for RA. I've had some vitamin changes too:)
Disease-Modifying Medicine
MS has tiers of treatment. Taking a disease-modifier is the first tier with the end-goal of relapse prevention. There are 4 options you can choose from. Dr. DeSabrio put this decision solely in my hands by handing my product information and telling me to choose. After research and prayer, I chose Copaxone...it had the least amount of scary side-effects. If I relapse, we'll look at other options. The higher tiered meds have a higher rate of relapse prevention but the side effects are increased.
I give myself shots 3x a week. Initially, it was terrifying. Now, no big deal! There are 8 injection sites I rotate to, even though I usually just do stomach, hips and thighs. Props to my body fat for making it easier for me. The kids are used to it now. It's not a big deal that Mom does shots, my little guy usually watches because he likes to clip the needle right after I'm done. It's a normal part of family life now, which I'm grateful for. The medicine is quite expensive, $5k+ a month, but thanks to insurance and Shared Solution's patient assistance program, it's free. I'm convinced I'm part of some secret study somewhere.
In MS, your T-cells are messed up. These cells normally attack foreign invaders and make-up your immune system. Somehow they get the wrong message and attack the body's sheathing around the spinal cord, brain and optic nerve (just brain and spine for me). These attacks create lesions, or exposed openings where your Central Nervous System can go haywire. This lead to all sorts of other issues. Copaxone kills those T-cells so they don't attack my body, which is nice. However, I learned this spring that a side-effect of Copaxone is rendering my immune system almost defenseless, where it can't recognize the good germs from the bad. See blog post for the story.
I'm fortunate that Copaxone doesn't effect me otherwise. I do get swelling/redness at the injection site, no biggie and I don't actually feel any different taking it or not taking it. Yes, it does come with potential scary side effects (like higher rate of cancers, etc.) but I feel it's the best choice for me for the time. I focus on living in the present and not worrying about what might be. Right now, I'm in remission, so it appears to be working.
Diet/Nutrition
The idea that diet can effect MS has been a long-debated controversy. Nutritional studies are just coming out and findings, as well as countless anecdotal stories, are pointing to the value of really solid nutrition. When I was first diagnosed and had A LOT of time in the hospital, I started researching. The BEST resource I found was here: https://www.msdietforlife.com/ms-diet/ where Kim shares her findings on why eliminating gluten, dairy, sugar, most meats and processed foods are key to managing MS. It's really all about inflammation. Anything that will cause inflammation can activate those T-cells to attack. I avoid inflammatory foods at all cost.
For someone with a lifetime of emotional eating. This was daunting, but guess what? The thoughts of lesions on my brain and spinal cord terrify me and are the world's best motivators. I was able to move to this diet immediately and I have never looked back. Yes, it's tricky, expensive and deliberate. However, it's life and it's manageable. I'll do a separate post on the specifics. My family has been great about it. I do have a lot of excellent resources that I will share.
The happy side effect of this way of eating is weight loss, which is something I have really struggled to do throughout my adult life. There are a lot of reasons why a healthy weight is beneficial for MS patients: less inflammation, more energy, greater physical capacity, etc. My neuro has been delighted at my lifestyle change. I've lost about 40-45 lbs. since diagnosis and will continue to slowly taper down. It helps symptoms and I actually feel healthy most of the time.
The happy side effect of this way of eating is weight loss, which is something I have really struggled to do throughout my adult life. There are a lot of reasons why a healthy weight is beneficial for MS patients: less inflammation, more energy, greater physical capacity, etc. My neuro has been delighted at my lifestyle change. I've lost about 40-45 lbs. since diagnosis and will continue to slowly taper down. It helps symptoms and I actually feel healthy most of the time.
Vitamins/Supplements
Part of the initial difficulty of MS is that patients tend not to absorb vitamins. This can be extremely problematic and effects all kinds of thing. Eating well and taking vitamins/supplements is crucial to my health because it builds up my faulty immune system, nourishes my cells, helps my body function better, etc. I truly believe I was able to enter remission soon after diagnosis because of what I stopped and then started putting in my body. My basic vitamins are a strong multi-vitamin (no iron added), vitamin C when needed, a Claritin allergy pill (I have year-round seasonal allergies) and a prescription thyroid (low) pill. Other MS-specific ones are listed below.
Quick note on vitamins--the easier they absorb, the better. This was a good resource for me: https://www.puresciencesupplements.com/blogs/articles/ultimate-guide-to-supplements-part-4-dietary-supplement-delivery-system-which-form-of-supplement-is-the-best-capsule-tablets-or-powder My internist also recommend I take apart capsules and put in chicken broth or smoothies to speed up good absorption.
When do I take them? First thing in the morning with a big water and usually my breakfast smoothie. It's worked for me.
How do I know they are working? I do get a full blood panel to check my vitamin levels 2-3 times a year. I also know what "normal" feels like for me. If I'm not "normal", I find out why quickly.
Is it expensive? Yes, the vitamin regiment I use is pricey. However, so is a wheelchair, retiring from my job, etc. I am blessed to have the finances to do this. Part of it is from my husband's support, who makes more as an electrical contractor than I do as a Utah teacher (shocker!) and part of it comes from my HSA through the health insurance my employer provides. I am unbelievably grateful for both.
MS patients must have Vitamin D. Even in sunshine, we can't absorb the normal amounts, so a supplement is needed. Coupled with my lily-white skin and the fact I can't tolerate heat makes that D-3 supplement the most important one I take. I don't endorse a particular brand (I usually buy local for this one) but I do take 5,000 IU in drop form year round. Recent blood tests show I'm maintaining a high level--which is great! I also notice when I walk or hike in the mornings and soak up sunshine (before the heat kicks in), I feel great!
I do a lot of my own research. If there is evidence and it feels right, I try it. I pray daily for God to guide my management of MS and that feeling I get is a guiding force. I won't post all my research here, but I'll give links and always feel free to ask questions and, most importantly, consult with your doctor. I should add that I look at research studies for dosing information as well. I'm pretty in tune with the body at this point, so if something feels weird, I can tell.
Alpha Lipoic Acid: it is believed that Alpha (we're on a first name basis) can reduce inflammation and even reduce degeneration of the optic never and spinal cord. Knock on wood, my optic nerve is ok, but spinal cord is not. My cord (near my neck) is where my biggest lesion is and other lesions (I don't even know how many) dot my cord up and down. I'm all about protecting that cord. I take 1200 mg of Alpha each day. I purchase off Amazon from Superior Labs. I know there are two schools of thought of vitamin purchase from Amazon, but I haven't run into any issues and it does save $$.
Multi-Vitamin: Nutrafol Sadly, I've had major hair thinning since diagnosis and thyroid issues. My doc recommended Nutrafol to promote hair growth AND it's a solid multi vitamin. I've been pretty happy with it. See link for more information.
Iron Supplement: I am frequently anemic unless I take an iron supplement. Best one I've found, that is effective and easy on the stomach is: Floradix!! Can't say enough good about it--google for details. I purchase through Amazon.
Part of the initial difficulty of MS is that patients tend not to absorb vitamins. This can be extremely problematic and effects all kinds of thing. Eating well and taking vitamins/supplements is crucial to my health because it builds up my faulty immune system, nourishes my cells, helps my body function better, etc. I truly believe I was able to enter remission soon after diagnosis because of what I stopped and then started putting in my body. My basic vitamins are a strong multi-vitamin (no iron added), vitamin C when needed, a Claritin allergy pill (I have year-round seasonal allergies) and a prescription thyroid (low) pill. Other MS-specific ones are listed below.
Quick note on vitamins--the easier they absorb, the better. This was a good resource for me: https://www.puresciencesupplements.com/blogs/articles/ultimate-guide-to-supplements-part-4-dietary-supplement-delivery-system-which-form-of-supplement-is-the-best-capsule-tablets-or-powder My internist also recommend I take apart capsules and put in chicken broth or smoothies to speed up good absorption.
When do I take them? First thing in the morning with a big water and usually my breakfast smoothie. It's worked for me.
How do I know they are working? I do get a full blood panel to check my vitamin levels 2-3 times a year. I also know what "normal" feels like for me. If I'm not "normal", I find out why quickly.
Is it expensive? Yes, the vitamin regiment I use is pricey. However, so is a wheelchair, retiring from my job, etc. I am blessed to have the finances to do this. Part of it is from my husband's support, who makes more as an electrical contractor than I do as a Utah teacher (shocker!) and part of it comes from my HSA through the health insurance my employer provides. I am unbelievably grateful for both.
MS patients must have Vitamin D. Even in sunshine, we can't absorb the normal amounts, so a supplement is needed. Coupled with my lily-white skin and the fact I can't tolerate heat makes that D-3 supplement the most important one I take. I don't endorse a particular brand (I usually buy local for this one) but I do take 5,000 IU in drop form year round. Recent blood tests show I'm maintaining a high level--which is great! I also notice when I walk or hike in the mornings and soak up sunshine (before the heat kicks in), I feel great!
I do a lot of my own research. If there is evidence and it feels right, I try it. I pray daily for God to guide my management of MS and that feeling I get is a guiding force. I won't post all my research here, but I'll give links and always feel free to ask questions and, most importantly, consult with your doctor. I should add that I look at research studies for dosing information as well. I'm pretty in tune with the body at this point, so if something feels weird, I can tell.
Alpha Lipoic Acid: it is believed that Alpha (we're on a first name basis) can reduce inflammation and even reduce degeneration of the optic never and spinal cord. Knock on wood, my optic nerve is ok, but spinal cord is not. My cord (near my neck) is where my biggest lesion is and other lesions (I don't even know how many) dot my cord up and down. I'm all about protecting that cord. I take 1200 mg of Alpha each day. I purchase off Amazon from Superior Labs. I know there are two schools of thought of vitamin purchase from Amazon, but I haven't run into any issues and it does save $$.
Acetyl-L-Carnitine This mimics an amino acid produced in your body and can lead to decreased fatigue. It also can energize the brain and promotes healthy neuro function (it actually aids a specific neurotransmitter). Many people with neurological conditions take this one. Luckily, fatigue isn't a regular symptom for me, but when I do have it during a flare, it's horrendous. I can't even begin to explain how it effects me. I'm hoping supplements like this one continue to strengthen me and anything that helps my beautiful brain stay functional is a-ok in my book. This one also has a side-effect of appetite suppressant. This has helped me as well as battling my normally-voracious is something I don't have to worry about anymore. My dosage is 3000 mg. daily. I purchase from Pure Labs off of Amazon.
Magnesium Having enough magnesium is a big deal for MS patients. For starters, it helps keep things regular--if you know what I mean. MS can effect bowel and bladder so that things don't always work the way they should. Magnesium also can contribute to mylein strength, helps stave off leg cramps/muscle tightness, etc. that can be a MS symptom. My internist, Dr. Grace Paradela in St. George, UT formulates her own and I buy from here. I've had to play around with magnesium and my diet to get the right dosage. I found that 1 pill works well for me.
Multi-Vitamin: Nutrafol Sadly, I've had major hair thinning since diagnosis and thyroid issues. My doc recommended Nutrafol to promote hair growth AND it's a solid multi vitamin. I've been pretty happy with it. See link for more information.
Myer's Cocktail (how I get my B vitamins and glutathione) I've linked a site here, but there are a ton. This one just had good, concise information on what the vitamin infusion is. I heard about this from a friend who runs Watts Wellness in St. George, Utah. People of all abilities and will all sorts of medical conditions use this as a way to get vitamins absorbed quickly, in concentrated doses. I go about once-a-month. It's helped my energy levels, decreased numbness and has helped build-up my immune system. I add glutathione each time as well. Information on glutathione is on link--it's a powerful antioxidant that helps me feel better.
Omega 3/6 Balance Oil Zinzino I heard about this product from an MS friend in Sweden. I'm trying it now, then plan on joining and selling it to others. It's an Omega 3/6 oil that balances your consumption of both. Feel free to click around on the site and research this one. I'm getting my own tests results down to see how it's helping me. Totally worth checking out. I'll be posting more about this as I continue to take it and watch my progress.
Iron Supplement: I am frequently anemic unless I take an iron supplement. Best one I've found, that is effective and easy on the stomach is: Floradix!! Can't say enough good about it--google for details. I purchase through Amazon.
New Additions
Lithium Orotate- for brain health and mood
Lion's Mane from Fungi Perfecti- for nerve health and memory support
Turmeric Supplements Make sure it has black pepper in it for absorption
Dr. Axe Soil Based Probiotics For gut health (these are my favorite)
Turmeric Supplements Make sure it has black pepper in it for absorption
Dr. Axe Soil Based Probiotics For gut health (these are my favorite)
Lifestyle/Exercise
There is a wealth of evidence about why a healthy lifestyle will help MS. It's important to keep our bodies limber by stretching, activate our muscles and joints and being healthy goes a long way for mental clarity!
You'll see that I link to the National MS Society a lot--here the link that helped me create my own healthy lifestyle: https://www.nationalmssociety.org/Living-Well-With-MS
Cardio: On a good week I'm walking or hiking 5-6 days. I do live in the desert and have to be mindful of temperatures. In winter, I'm out after work (later afternoon), in summer, I'm out around 7-8am before the heat sets in.
Toning: I love to swim and bike. Definitely have slacked off on these during the school year, but hoping for a summer re-surge. My hubs has been building a pool for me in our backyard and I'm very excited to get back in the water. I also do weights--nothing intense, but something:)
Stretching/Toning: Stretching is very important and I need to make sure I do it every day. I am also doing free weights (current favorite workout: https://www.youtube.com/watch?v=hAGfBjvIRFI) and I'm doing stretching/workouts through my chiropractor's "Posture Academy" to help align my spine: www.thepostureacademy.com The only way I work this stuff in is in the evening before bedtime.
Yoga: Yoga is fantastic too, I am looking for a way to incorporate it more into my routine. Summer is my time off work, so I can reconfigure and revise my fitness. I think, for yoga, I need to pony-up and attend a class--otherwise it doesn't get done.
There is a wealth of evidence about why a healthy lifestyle will help MS. It's important to keep our bodies limber by stretching, activate our muscles and joints and being healthy goes a long way for mental clarity!
You'll see that I link to the National MS Society a lot--here the link that helped me create my own healthy lifestyle: https://www.nationalmssociety.org/Living-Well-With-MS
Cardio: On a good week I'm walking or hiking 5-6 days. I do live in the desert and have to be mindful of temperatures. In winter, I'm out after work (later afternoon), in summer, I'm out around 7-8am before the heat sets in.
Toning: I love to swim and bike. Definitely have slacked off on these during the school year, but hoping for a summer re-surge. My hubs has been building a pool for me in our backyard and I'm very excited to get back in the water. I also do weights--nothing intense, but something:)
Stretching/Toning: Stretching is very important and I need to make sure I do it every day. I am also doing free weights (current favorite workout: https://www.youtube.com/watch?v=hAGfBjvIRFI) and I'm doing stretching/workouts through my chiropractor's "Posture Academy" to help align my spine: www.thepostureacademy.com The only way I work this stuff in is in the evening before bedtime.
Yoga: Yoga is fantastic too, I am looking for a way to incorporate it more into my routine. Summer is my time off work, so I can reconfigure and revise my fitness. I think, for yoga, I need to pony-up and attend a class--otherwise it doesn't get done.
Mindset/Attitude: I've been in therapy for other things, but it's taught me a lot about coping with tough things emotionally. Again, a plethora of resources abound here. This is what works for me:
- Connection with God--I am LDS (Church of Jesus Christ of Latter Day Saints). My faith gives me purpose, hope and stability. I believe there is a reason for suffering and that there are ways my struggles can have meaning and there are ways I can get relief. I connect with my Heavenly Father and Savior daily through prayer, scriptures, etc. The deliberate connection brings me a great deal of peace that I'm forever grateful for.
- Live in the Present Only: The past is past, we can't fix or control it. The future is on it's way and what will happen will happen. The present? The present is a gift--live in it, enjoy it. For me, thinking about the future is terrifying. I can't go there in my head. It's all about enjoying and living for what is happening right now.
- Therapy Helps!: I originally started seeing a therapist about 2 1/2 yrs ago over relationship issues. I still visit with my therapist and receive a lot of support. Bouncing ideas and thoughts off someone who knows me well and points me in the right direction has proven to be very helpful.
- Headspace: Excellent app to learn how to meditate! Everything I know about meditation started here and it's been extraordinarily helpful.
- Humor: Luckily, I am a generally happy person although I do struggle with depression that comes and goes. Humor is a lifeline for me. I'm also stubborn enough that it pisses me off that MS has some control over me, so I fight it every step of the way:) I can also laugh at myself and constantly make MS jokes. It's easy to marinate in sorrow, but life is too short. Every laugh, every smile, every step forward is a small victory over this sucky, incurable disease!
- Mindset Checks: Each day I keep a gratitude journal of what I'm thankful for--this centers me. Every challenge or potential setback? I spin it in my head to a positive. It's how I am coping. I'm also super-open and transparent about the disease. It's helped de-mystify it for my kids and family and makes it not-such-a-big-deal for me. I'm also determined to talk about it enough that I'll inspire a student who will go on to cure the disease in my honor, ha ha!
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