Right on! I don't take any disease modifying drugs either!! I have had MS 40 years!! I was end stage 8 years ago, 4 years in wheelchair!! Deathbed respiratory pneumonia 3 months!! Now I bicycle tour cross country to raise money for the National MS Society!!💪😁🌎🚴 Last summer I rode from Portland Maine to Yellowstone National Park!! Put on 3000 Miles through 15 states on the route I took!!
I love this video I just love it... my younger sister just referred to me as "handicap" and I suddenly feel like "I don't want to be referred as that" and now I stumbled on this vid 🥰
Thanks buddy. And even BIGGER thanks for helping to get me off on the right foot with the disease. I hope your guys are doing good and always like seeing the new art projects
Yay! Great hearing from you ... that's a solid diet and one that works for many people. Good luck with it! Transitions and food can be hard, but after a while it all seems normal and natural
SO stoked when I see your annual update pop up! Great to hear you are still doing so well. I am too..I am 61 yrs old and twenty years into this for me, still no diagnosis. I have backed off on seeing the neurologists for the time being. Like you, I am focusing on eating whole foods, some supplements and staying active. SO far so good. I don't have current MRI scans, but judging by how I feel I am better than when I first began having symptoms. Thank you for your encouraging and honest updates Spencer, I'm sure I am not the only one blessed by them.
I am so happy you're doing well. I have also committed to eating real whole foods (Wahls Protocol), sleeping well, and removing chronic stress. After my initial symptoms/diagnosis in 2021 I am still in remission with no new symptoms! Last year my MRI showed no new lesions and the existing ones were healing. I am on Ocrevus still but I am in a weird situation bc I want to stop doing my DMT, but it's a bit too early to convince my neurologist to stop taking it. I see him again in June so we'll see what he says after another MRI!
No new symptoms and no new lesions ... that's great! I'm sure you'll figure out the situation with the neurologist, but I think it's good to remember that your treatment is YOUR choice, not a decision made by anyone else. Anyway, be well and keep it up!
Thank you for sharing your story. My husband had just been diagnosed at 69 years of age (a lot going on with symptoms). Your story is very encouraging!
Hey Spencer. Of all the different people on UA-cam sharing their life experiences with MS, you are my favorite. I'm glad you are having success with the antiinflammatory diet and are able to live a relatively normal life. That is very encouraging! I'm pulling for you, and I know many others on here are as well. 👍
I'm so happy I stumbled upon your video Spencer, your so right, most of what you find online about MS is depressing to say the least. Although my MS story is not as positive as yours YET, its so great to see your living a great fulfilling life in spite of not being on any disease modifying drugs, its very inspiring. Drugs are not for everyone, the only MS drug I've heard somewhat positive things about is LDN, but it doesn't work for everyone. I stress when I have to take an Advil for pain, wondering what damage its doing to my liver at the same time. So the stress that it would cause me to take any immune modifying drugs in addition to any other risks it came with, and they all have risks, just isn't worth it. I know "never say never" but for now I'm going to stick with my anti-inflammatory diet and I just started adding in some extended water fasts. The best of luck on your continued success Spencer and anyone else that is dealing with this awful disease. Quote I try to remember daily "To fall down is an accident, to stay down is a choice"
I really like your attitude and just get a very positive vibe from you! good stuff! I'm hoping all the best for you and thanks for the encouragement :)
Thanks for the update! Glad you're doing so well. I do take Tysabri for my MS and it's been a great medication for me. I will say a medication is only a tool. For overall wellness I completely agree that a whole food/ anti-inflammatory diet and active lifestyle is key.
Great to hear! When I was first diagnosed I considered Tysabri, but I have too high of a JC virus load to handle it. Glad to hear thoughts on wellness :)
Glad I found your channel. I was finally diagnosed in 2021 at 46. Also they found an eight ball size brain tumor on my cerebellum which they said been growing for over 20+ and is a rare form of MS. Which moves over to RRMS. Vertigo Optic neritus, balance and so much more. So I understand!
great video as always. weirdly got last years update on my feed... only saw this one on the updated timeline now... would be awesome if you could give some details about your diet, what you do and dont eat and how you structure your meals around the things you do eat. keep safe and stay healthy dude.
A few years back I posted an overview of my diet here: metaspencer.blogspot.com/2016/10/modified-wahls-protocol-diet.html?q=diet ... It's changed a bit but the basics are to focus on whole foods, avoid fried and heavily processed foods, etc. Getting your Vitamin D checked might not be a bad idea ... hang in buddy!
@@SpencersMSStory ok great thanks for that I will check it out... perhaps time to also simplfy my diet somewhat... I used to tend to just grab a pie or something off the shelf when I was doing my handyman thing... never made time to really stick to eating healthy as regularly as I should. better things ahead though. gotta stay positive. i have a big ol tub with vit D so will pop it daily now... thanks for that tip
Thank you for your update. I find it so strange that MS symptoms sort of ' go away' and people feel ok and then the weird stuff comes back. It seems like you are going through remission. I hope you carry on being healthy for the longest time.
@@SpencersMSStory Going to try my best, although I have altered my diet I believe I can be slightly more strict / not allowing for exceptions as much as I have recently. Finished a half marathon last weekend so hope to keep moving - I think exercise/keeping active as you have been doing, besides eating well, is key to reducing inflammation. Currently I take a DMT as I am still young and my first relapse left me blind in one eye (i am scared to lose more function). However the DMT (tecfidera) activates the "NRF2" pathway, the same pathway activated by exercise...
💫 Thanks for the update You are an inspiration ❤ to us all. Enjoy your positivity 😎 Glad you found a way that works for your journey! Proud of you One day at a time ... find happiness Wishing everyone a great day.
Inspirational. At 56 with 5-month MS diagnosis I am still fighting the fire/water sensations. I need to de-stress and diet. I'll pick up those 3 books and see what I see. Rock on Spenser. Live your life. (X-upstate NY-er now in San Diego)
5 months! it's all very fresh for you. hang in, stay positive, take things slow. You've gotta know that many of us are doing very well with MS. Be strong!
In context with MS or other things like these, I have observed people with strong and positive mindset always have a better outcome!!! Good luck for future endeavours. Give me a shout if you plan to come to the U.K. lol. Be nice to have a coffee or something!!!!!!
Thank you for your videos and positive approach, Spencer. I have MS and I try to avoid negative voices (mostly doctors and MS societies etc) in favour of positive stories like your own. I really find my symptoms are linked to diet. I’ve tried a few different diets over the years, with limited noticeable difference. However, for the past few months I’ve been on a carnivore diet (pretty much the opposite of what doctors etc would recommend) and the results have been quite amazing. I don’t know if it would work for you or others reading this, but it’s really working for me. I also have a business working at height in a manual job, so I need my strength and balance. I have also always refused any ms medication. My motivation in posting this is to help anyone else in any way I can.
I was diagnosed in my 30s I moved from Calif to AZ up in the mountains. I couldn't write my name or brush my hair. Up in the mountains of AZ. I went into a wonderful remission. Diet and vitamins worked great. We now live in FL. which I love. I became a diver and we have been here 14 yrs. I now am 73 and Damn its back. So I will see a neurologist soon. The meds that I hear about scare me. Stem cells at Mayo Clinic have helped put my daughters friend MS Free, I am hope getting back on a diet and vitamins that I took years ago, will put me back in remission again. its really not as bad as when it first hit me. But I doubt very much that mayo will give stem cells to a woman my age. Keep doing what you're doing. It's working. God bless. And thanks for you're video up date.
I was recently diagnosed with this monster of a disease I had optic neauritis about 2 months ago and it’s healed by up ok I guess. What really sucked was that I’m half blind in my other eye. But I’m totally with you on not going to a bunch of different doctors.I did do my first ocrevus treatment just recently but not sure if I’m gonna keep doing it. I’m really looking into the anti inflammatory diet and the vitamin D. I can go on all day with the positivity I’ve gained from your video. Just want to say thank you and I look forward to your next video. Thank you again. Oh and lastly I’m 38 and you give me so much hope of living a normal life. Stay well and thanks a ton.
Great hearing from ya even if it's this lousy disease that brought on the connection. Stay positive and get the inflammation down my friend! You can do it. Rest up.
I can relate. I'm also 38 and been on Ocrevus for 2 years. My MS left me legally blind in the right eye (20/200). I had my first symptoms at 19 years old and struggled with fatigue, cog fog, and anxiety for over 15 years until I was diagnosed and I'm glad to say they've all gone away since starting Ocrevus, along with a mostly anti-inflammatory diet, high dose vitamin D, and exercise. Been doing well for the last year. Hope you are too. Stay well.
22 here , had two relapses , non were debilitating , just mild numbness etc , and they went away fully , i finally conviced myself to get a dmt and tbh i am doing fine , tryna quit smoking , no symptoms , just hoping in the following years we have a guaratee that we wont progress and finally be able to call ms just bothersome, thanks for your story
Hang in! you'll get into some better habits and ways toward overall well being, it sounds like ... stay positive! many of us are doing super well much later in life on an anti-inflammatory diet
Awesome to hear! It sounds like we’ve followed similar paths with diet and avoidance of DMTs. I did have HSCT which hopefully halts progression permanently. Enjoy your annual updates!
I haven't been officially diagnosed (neurologists are very backlogged in my area) but most drs I've seen believe MS is most likely my issue given the symptoms I have had the last decade. I am so terrified of the future but this video really gave me hope. May I ask what diet you have found helps you? I think you are onto something regarding reducing inflammation because the only time I felt relief recently was when I went on an extended water fast. Anyway, thank you for you videos. Nvrmind I found your diet on your prior videos. Glad you found something that helps you.
Hang in there and stay positive! When I was first diagnosed I thought it was the end of the world ... but so many of us with the disease are doing REALLY WELL. Hang in
Hey Spencer, I am in my final semester of nursing school and my professor just linked your original 'My MS Story '. I saw how old it was and had to find a more recent video to see how you're doing... I am SO happy to see you well all these years later!
MS sucks. This November will be 20 years since my diagnosis. I was 20 when I was diagnosed. I've always been a hypochondriac, so when my vision got a little blurry in my left eye, I went to the doctor. I'm so blessed. My toes feel like they're numb and I'm really tired a lot of the time. Since my neurologist put me on Ocrevus, about three years ago, I haven't had any new lesions or exacerbations.🙏
The first 12 years or so went well for me but I am playing the "long game". MS is a marathon and not a spring and "results will vary". I also don't think it can be managed just by "this or that"...do I eat good OR take a DMT, do I stop smoking OR workout...You need to do all you can. So I do the DMT (Ocrevus) and eat well, live a clean life-style, be active, etc etc...hope it all works for you without a DMT and hope you don't regret. Ocrevus has certainly helped me as has Ampyra...after 18 years still working, still active and doing the best I can. We all have to do what we can manage and hope it works and we have no regrets..an annual assessment is a good idea...at 18 yrs in this is working for me
I think what we eat impacts on our health more then we give credit for. So much that happens in our gut effects our overall health. Ive def had some MS type symptoms over the years(15 years) It comes and goes, just coming through a more challenging couple of months. I am very active and find walking for me is very positive. My memory is still good. It effects my eyes, its really weird. I know if I go to the doctors, there will be lots of tests. This illness is not easy to diagnose as many symptoms mimic other deseases. I am 70 years old and living my life.I am happy not knowing for now. I have friends with Parkinsons and MS so have good insight what goes on. Of course it may not be MS!
Thanks for the update! I've watched your other MS Story videos. Glad the diet, Vitamin D and physical activity has worked out so well for you!! Just last night I went down a rabbit hole re medications for a few differnt diseases that family or friends are dealing with. I ran across a now - off label, experimental drug paper and it sounds interesting - LDN for low dose natrexal (sp?), kind of like the drug use to treat opiate issues, except that a 4.5 mg dose of LDN helps in that "modifying" phase some are touting. Anyway, it might help people on the path to what has worked for you, by getting them motivated (via lowered pain levels) to exercise and eat a better diet. Thank Spencer, always appreciate your videos and philosophies. Looking forard to the next one! 🎉
Diagnosed 20 years 😅 Then hypothyroidism, I have optic neuritis and PBA. Then.. I got a diagnosis of crps. I’m 44 in a wheelchair, and I don’t think I’ll ever be sad that I’m using a wheelchair because it’s how I roll 😊😊😊😊😊
@@SpencersMSStory it took a lot of inner work to get me here! I was distraught at first but, in time and a lot of sorting through my feelings I am here now. We have to keep “smylein” 🧡
hello, thanks for sharing your experience. I have been diagnosed just recently but I have had some mild symptoms since 8 years, mostly surrounding vision problems. No relapse, no debilitating situations, no tingling, ... I think it's because I have been a long term vegan ! Can you please tell me how much vitamin D you take ? Stay healthy !
Go vegan! I completely agree with you on that point as I was also vegan and vegetarian for many years before being diagnosed, and my MS didn't get all that bad (comparatively). so hang in there! Also the cool thing about your diet is that shifting to an anti-inflammatory protocol shouldn't be that big of a step. Anyway yes, that D is important. I take 5k units a day and get my level checked annually. I thought that high amount of D would jack up my levels, but they've stayed in the middle of the healthy range for years. I also take D with K as that's supposed to help with absorption and something else I'm forgetting :)
Hi there. Thanks for sharing your story. Wondering if you did a lot of research into DMTs prior to making a decision not to be on one? I know it’s a big decision to make. I was diagnosed in late 2021 when I had bad ON. I did a lot of research on medications prior to starting and decided to get on Rituximab in Jan 2022 and I also eat better and exercise regularly and have been doing really well.
hello and good to hear from you. I read up on the drugs quite a bit when I was first diagnosed, and wasn't impressed by the numbers in terms of effectiveness. I also couldn't take Tysabri because I have a high JC virus load. At that point I figured "might as well try D and diet first and see how it goes" and I never turned back, as I haven't had an exacerbation since that time. I'm glad to hear you're doing well!
Odd that you say you are not listening to your Dr. and not getting scanned to know what is objectively truly going on. I would hope that not taking MS slow down meds will not permanently hinder your life more than it is now. I do feel I have befitted a lot from adding vitamin D but I am going to keep taking my MS meds and new ones as they advance considering the side effects each time (no doubt some of the cancer chemo meds were a deal breaker). 18+ years of MS at this point. Hope and pray you continue to be able work and feel well but not taking MS meds does not correlate in objective clinical trials to healthier outcomes. However I am willing to consider diet to be sure and I will look into the diets you mentioned. Pray you do well in your life and health.
I've had MS over 20 years and got annual scans with neurologist visits for several years ... with no changes over many years I'm less worried about it. Your faith in the medications is pretty common -- sounds like you've found a path that works for you through the disease
Snowflake disease. I think I really need to try an anti-inflammatory diet, its just hard with other family in the home. Maybe I'll have a good report next year for you
Yeah changing a diet can be personally hard with habits to break and new foods to figure out, but with a family it's even more challenging. That first year I ate kind of separately from my family, which was hard, but we gradually worked it out. Hang in!
I do have a question that I never seem to get answered on other people's history with MS on other blogs/video's to actual doctors video's. I was hoping someone can answer it for me on here. I'm in the process of being checked for MS but I also have fibromyalgia, my question is does fibromyalgia mimic MS or MS mimic fibromyalgia? I've been reading up on MS and it's symptoms and it's mirroring my fibromyalgia. Could I have been misdiagnosed 12+ years ago?
I wouldn't call it mimicry but many symptoms that appear in people with MS can be caused by other things. Since MS is based on a condition that damages the central nervous system, many other things can also damage that system. So yes, there is a lot of overlap with SYMPTOMS when it comes to MS and other things. Fibromyalgia is often found or diagnosed in people with things like fatigue, pain, etc. Those are symtoms also found in many people with MS. I'm assuming you're on a strict anti-inflammatory diet ... good luck to you!
@@metaspencerthank you so very very much for your reply, I truly appreciate it. At least I have somebody to give me real time experience with MS to understand the differences. Thing's have been getting worse for me over the past year that I can't explain away nor actually blame fibromyalgia only bc I wasn't giving the proper care or thought of beyond fibromyalgia. I'm just going to assume you know there are doctors out there that just want to keep you as a patient for the money instead of actually helping you. This is the state of Florida, I recently had blood work done to get my already scheduled MRI but the doctor's office wouldn't send the results to the MRI facility till I made an appointment with them first, pretty much holding my results hostage. I just got them to send the results (hope they are actually there) Florida doctor's like to play games no matter how serious a test u need to have. Thank you again for replying and for being you ❤️
Hi Spencer, thanks for the video I have had symptoms now for about a year I’ve had brain , c spine , thoracic and lumbar spine scans and all are clear of lesions and demyelination, what do you advise I should do? Thanks Paul
Great that you have good scans!! Awesome!!! If it were me I’d check my D levels just to be safe and go on a strict anti inflammatory diet based on whole foods
@@metaspencer thanks Spencer you look amazing in your videos you are doing great. I guess I have a fear of MS because my dad has it. I hope I continue to have normal MRI’s. Just to let you know I had 1.5 Tesla scanner without contrast, do you think the demyelinated lesions would still show? What scanners do you get scanned with? Thanks
Oh wow, it's still very fresh for you! Remember to breathe, stay positive, and slowly soak up that information. Just know that there are MANY of us doing very well with the disease
@@SpencersMSStory thank you ... I take cbd, magnesium, vit D, B1, B12, and omega 3 . .. I stopped drinking alcohol and stopped smoking .. my neurologist reckons I've had ms 11 years I'm 53 now.
So- without any scans you really have no idea how you are doing...when I was your age I didn't notice the impact of new lesions but knowing they were happening I knew that Copaxone and my lifestyle was not holding me although I wasn't feeling any changes- they were going on and in another 10 years you may feel it..usually 12-15 years after Dx or after you hit 50 years old or so
After 6 or 7 years of scans with no new lesions and being 52 now, I'm pretty confident that no new symptoms = no new lesions. That's my own comfort level; yours may be different
I blend the Wahls Protocol and Overcoming MS diets, which are both designed for people with MS. They focus on whole foods, no added sugars, no processed foods, no dairy, and plenty of anti inflammatory foods like fresh berries, turmeric, etc. No exacerbations in 6 or 7 years now so it seems to be working for me
Ok yeah makes sense. They’re kind of opposite diets in ways though right? I’m guessing you do a little meat (walls)but no gluten? Do u do coconut milk?
@@hankmt4819 Yeah Wahls is paleo so definitely has meat, which I generally don't eat (unless it's rich in omega 3s) ... but I really like how Wahls focuses on getting lots of nutrition through a variety of veggies. There's also the best bet diet for MS if you haven't seen it. Yeah, no gluten for me. When I got diagnosed I just tried to do everything possible to save my ass.
You'll find many lists of MS meds online. Dig deeper and you'll find side effects and potential outcomes. Here's an example of such a list from a pro-pharmaceutical MS organization: www.nationalmssociety.org/Treating-MS/Medications
The lesions on my spine say otherwise. Many others with the disease have a similar experience with the disease after getting on an anti-inflammatory diet
A complete MS diagnosis needs lesions in at least two places on the central nervous system: Brain, c-spine, thoracic spine. High O band counts in spinal fluid, too
Right on! I don't take any disease modifying drugs either!! I have had MS 40 years!! I was end stage 8 years ago, 4 years in wheelchair!! Deathbed respiratory pneumonia 3 months!! Now I bicycle tour cross country to raise money for the National MS Society!!💪😁🌎🚴 Last summer I rode from Portland Maine to Yellowstone National Park!! Put on 3000 Miles through 15 states on the route I took!!
sounds like you're doing great ... I like the sound of that ride :)
@@SpencersMSStory it was great! First time I've been to the East Coast and finally got to ride the Appalachians!! 😎👍🇺🇸🌎🚴🇺🇸
So glad to hear that, happy for you! What happened? How did you recover lol, sounds like a miracle.
@@BattlesCinematics I change the pH of my body from acidic to alkaline! And when on the doctor Terry wahls Ms diet protocol!!
@@BattlesCinematics MS responds well to vitamin D and an anti-inflammatory diet. it's pretty simple
Good for you!!! 🤩
So INSPIRING!!! 🥳🥳🥳 Thank you so much!
Great Video. I was diagnosed a year ago and still freaking out 🥹 I listen to many stories. It helps me 💕
A year isn't much time -- give yourself some time to figure stuff out. You can do it!
This gives me hope, thanks
Hope is a powerful thing. Stay positive! So many of us are doing great with this disease
Thank you from Sudan
You are my hero bro!
Always great seeing you out there doing it ... and you are my inspiration! hang in buddy
I love this video I just love it... my younger sister just referred to me as "handicap" and I suddenly feel like "I don't want to be referred as that" and now I stumbled on this vid 🥰
YEAH you've gotta work to define yourself. Good thinking!
Happy for you ❤ all the best wishes from the Netherlands
Big thanks!
Thank you!
You betcha!
So happy for you and find your story very inspiring!
Great to hear! be well
I love that you share these annually! I’m so glad you’re doing well! Thanks for sharing this video 🧡
So glad to hear another positive update Spencer! I often wonder how you are doing and hope all is going well. My best to you and M.
Thanks buddy. And even BIGGER thanks for helping to get me off on the right foot with the disease. I hope your guys are doing good and always like seeing the new art projects
You are very inspiring, positive and strong! I am 21 and your video made my day!
Hope you are keep thriving!
Good to hear my friend! stay positive and healthy
So greatful for your positive insight. Sometimes the negative thoughts do consume you
Good to hear. It's all about the good vibes and positive thinking :)
Great to see you looking and feeling well Spencer. 🙏
I'm about to start MS hope diet. Fingers 🤞 crossed.
Yay! Great hearing from you ... that's a solid diet and one that works for many people. Good luck with it! Transitions and food can be hard, but after a while it all seems normal and natural
Good to hear from you again Spencer! I've been patienly waiting for your update this year and i'm happy to hear everything is going well.😄
Thanks for the support! Yeah, I got a bit busy in March so was kinda late in sitting down to make the video :) i hope all is well with you
SO stoked when I see your annual update pop up! Great to hear you are still doing so well. I am too..I am 61 yrs old and twenty years into this for me, still no diagnosis. I have backed off on seeing the neurologists for the time being. Like you, I am focusing on eating whole foods, some supplements and staying active. SO far so good. I don't have current MRI scans, but judging by how I feel I am better than when I first began having symptoms.
Thank you for your encouraging and honest updates Spencer, I'm sure I am not the only one blessed by them.
That is great news Carol! It sounds like you've navigated through things quite well ... I'm glad to hear it!
I am so happy you're doing well. I have also committed to eating real whole foods (Wahls Protocol), sleeping well, and removing chronic stress. After my initial symptoms/diagnosis in 2021 I am still in remission with no new symptoms! Last year my MRI showed no new lesions and the existing ones were healing. I am on Ocrevus still but I am in a weird situation bc I want to stop doing my DMT, but it's a bit too early to convince my neurologist to stop taking it. I see him again in June so we'll see what he says after another MRI!
No new symptoms and no new lesions ... that's great! I'm sure you'll figure out the situation with the neurologist, but I think it's good to remember that your treatment is YOUR choice, not a decision made by anyone else. Anyway, be well and keep it up!
Thank you. You and others are the best inspiration and testimony to lifestyle and genuine health & wellness.
Be well!
Thank you for sharing your story. My husband had just been diagnosed at 69 years of age (a lot going on with symptoms). Your story is very encouraging!
Hang in there! I hope he's doing okay
Hey Spencer. Of all the different people on UA-cam sharing their life experiences with MS, you are my favorite. I'm glad you are having success with the antiinflammatory diet and are able to live a relatively normal life. That is very encouraging! I'm pulling for you, and I know many others on here are as well. 👍
Great to hear and nice of you to say! I really appreciate the encouragement :)
I'm so happy I stumbled upon your video Spencer, your so right, most of what you find online about MS is depressing to say the least. Although my MS story is not as positive as yours YET, its so great to see your living a great fulfilling life in spite of not being on any disease modifying drugs, its very inspiring. Drugs are not for everyone, the only MS drug I've heard somewhat positive things about is LDN, but it doesn't work for everyone. I stress when I have to take an Advil for pain, wondering what damage its doing to my liver at the same time. So the stress that it would cause me to take any immune modifying drugs in addition to any other risks it came with, and they all have risks, just isn't worth it. I know "never say never" but for now I'm going to stick with my anti-inflammatory diet and I just started adding in some extended water fasts. The best of luck on your continued success Spencer and anyone else that is dealing with this awful disease. Quote I try to remember daily "To fall down is an accident, to stay down is a choice"
I really like your attitude and just get a very positive vibe from you! good stuff! I'm hoping all the best for you and thanks for the encouragement :)
Thanks for the update! Glad you're doing so well. I do take Tysabri for my MS and it's been a great medication for me. I will say a medication is only a tool. For overall wellness I completely agree that a whole food/ anti-inflammatory diet and active lifestyle is key.
Great to hear! When I was first diagnosed I considered Tysabri, but I have too high of a JC virus load to handle it. Glad to hear thoughts on wellness :)
I agree! Medication is one of the tools we use to manage our disease. Diet and lifestyle are other tools in our toolbox.
Glad I found your channel. I was finally diagnosed in 2021 at 46. Also they found an eight ball size brain tumor on my cerebellum which they said been growing for over 20+ and is a rare form of MS. Which moves over to RRMS. Vertigo Optic neritus, balance and so much more. So I understand!
sounds like a wild mix of things for you! hang in there ... I bet it's nice to have found some answers (eventually) Hang in!
great video as always. weirdly got last years update on my feed... only saw this one on the updated timeline now... would be awesome if you could give some details about your diet, what you do and dont eat and how you structure your meals around the things you do eat. keep safe and stay healthy dude.
A few years back I posted an overview of my diet here: metaspencer.blogspot.com/2016/10/modified-wahls-protocol-diet.html?q=diet ... It's changed a bit but the basics are to focus on whole foods, avoid fried and heavily processed foods, etc. Getting your Vitamin D checked might not be a bad idea ... hang in buddy!
@@SpencersMSStory ok great thanks for that I will check it out... perhaps time to also simplfy my diet somewhat... I used to tend to just grab a pie or something off the shelf when I was doing my handyman thing... never made time to really stick to eating healthy as regularly as I should. better things ahead though. gotta stay positive. i have a big ol tub with vit D so will pop it daily now... thanks for that tip
Thank you for your update. I find it so strange that MS symptoms sort of ' go away' and people feel ok and then the weird stuff comes back. It seems like you are going through remission. I hope you carry on being healthy for the longest time.
Yeah the nervous is crazy: damage can lead to all kinds of strangeness over time. thanks for the encouragement!
Great to see you are doing so well :) Hope I can say the same when I am in my 50s, MS is a scary disease :/
Thanks! Stay well and keep that inflammation down
@@SpencersMSStory Going to try my best, although I have altered my diet I believe I can be slightly more strict / not allowing for exceptions as much as I have recently. Finished a half marathon last weekend so hope to keep moving - I think exercise/keeping active as you have been doing, besides eating well, is key to reducing inflammation. Currently I take a DMT as I am still young and my first relapse left me blind in one eye (i am scared to lose more function). However the DMT (tecfidera) activates the "NRF2" pathway, the same pathway activated by exercise...
💫 Thanks for the update
You are an inspiration ❤
to us all.
Enjoy your positivity 😎
Glad you found a way that
works for your journey!
Proud of you
One day at a time ...
find happiness
Wishing everyone a great day.
Big thanks for that!
Inspirational. At 56 with 5-month MS diagnosis I am still fighting the fire/water sensations.
I need to de-stress and diet. I'll pick up those 3 books and see what I see. Rock on Spenser. Live your life. (X-upstate NY-er now in San Diego)
5 months! it's all very fresh for you. hang in, stay positive, take things slow. You've gotta know that many of us are doing very well with MS. Be strong!
I don’t have MS but I follow you on insta and here cos I like your energy! You smashed it with that container shed you did🎉
Good hearing from ya! yeah, the container building has been a good one :)
In context with MS or other things like these, I have observed people with strong and positive mindset always have a better outcome!!! Good luck for future endeavours. Give me a shout if you plan to come to the U.K. lol. Be nice to have a coffee or something!!!!!!
@@maroofkhan7826 Absolutely!
Thank you for your videos and positive approach, Spencer. I have MS and I try to avoid negative voices (mostly doctors and MS societies etc) in favour of positive stories like your own.
I really find my symptoms are linked to diet. I’ve tried a few different diets over the years, with limited noticeable difference. However, for the past few months I’ve been on a carnivore diet (pretty much the opposite of what doctors etc would recommend) and the results have been quite amazing. I don’t know if it would work for you or others reading this, but it’s really working for me. I also have a business working at height in a manual job, so I need my strength and balance. I have also always refused any ms medication. My motivation in posting this is to help anyone else in any way I can.
I'm glad you've found a path through this crazy disease, and I appreciate what you say about positivity! It's just sooooo important
Check prolotherapie
I was diagnosed in my 30s I moved from Calif to AZ up in the mountains. I couldn't write my name or brush my hair. Up in the mountains of AZ. I went into a wonderful remission. Diet and vitamins worked great. We now live in FL. which I love. I became a diver and we have been here 14 yrs. I now am 73 and Damn its back. So I will see a neurologist soon. The meds that I hear about scare me. Stem cells at Mayo Clinic have helped put my daughters friend MS Free, I am hope getting back on a diet and vitamins that I took years ago, will put me back in remission again. its really not as bad as when it first hit me. But I doubt very much that mayo will give stem cells to a woman my age. Keep doing what you're doing. It's working. God bless. And thanks for you're video up date.
Sounds like you've had a wild ride, my friend. Hang in there and get that inflammation down ASAP. Be well
I was recently diagnosed with this monster of a disease I had optic neauritis about 2 months ago and it’s healed by up ok I guess. What really sucked was that I’m half blind in my other eye. But I’m totally with you on not going to a bunch of different doctors.I did do my first ocrevus treatment just recently but not sure if I’m gonna keep doing it. I’m really looking into the anti inflammatory diet and the vitamin D. I can go on all day with the positivity I’ve gained from your video. Just want to say thank you and I look forward to your next video. Thank you again. Oh and lastly I’m 38 and you give me so much hope of living a normal life. Stay well and thanks a ton.
Great hearing from ya even if it's this lousy disease that brought on the connection. Stay positive and get the inflammation down my friend! You can do it. Rest up.
I can relate. I'm also 38 and been on Ocrevus for 2 years. My MS left me legally blind in the right eye (20/200). I had my first symptoms at 19 years old and struggled with fatigue, cog fog, and anxiety for over 15 years until I was diagnosed and I'm glad to say they've all gone away since starting Ocrevus, along with a mostly anti-inflammatory diet, high dose vitamin D, and exercise. Been doing well for the last year. Hope you are too. Stay well.
Lookin good at 52. I got diagnosed with MS 7 years ago and am doing great too... I take Ocrevus though.
7 years ago! I'm guessing it's settled in. We all find our way through this disease differently ... I hope it's working for you!
22 here , had two relapses , non were debilitating , just mild numbness etc , and they went away fully , i finally conviced myself to get a dmt and tbh i am doing fine , tryna quit smoking , no symptoms , just hoping in the following years we have a guaratee that we wont progress and finally be able to call ms just bothersome, thanks for your story
Hang in! you'll get into some better habits and ways toward overall well being, it sounds like ... stay positive! many of us are doing super well much later in life on an anti-inflammatory diet
Awesome to hear! It sounds like we’ve followed similar paths with diet and avoidance of DMTs. I did have HSCT which hopefully halts progression permanently. Enjoy your annual updates!
Great to hear, buddy! It's so great to hear from the many others who have avoided the drugs and found other productive and healthy paths through this
Spencer! Looking good! So glad thing’s continue to be stable! I would love to have you on my channel for a chat about how we live with our MS.
Always good to hear from you and to see your yummy meals on the inter webs :)
I haven't been officially diagnosed (neurologists are very backlogged in my area) but most drs I've seen believe MS is most likely my issue given the symptoms I have had the last decade. I am so terrified of the future but this video really gave me hope. May I ask what diet you have found helps you? I think you are onto something regarding reducing inflammation because the only time I felt relief recently was when I went on an extended water fast. Anyway, thank you for you videos.
Nvrmind I found your diet on your prior videos. Glad you found something that helps you.
Hang in there and stay positive! When I was first diagnosed I thought it was the end of the world ... but so many of us with the disease are doing REALLY WELL. Hang in
Hey Spencer, I am in my final semester of nursing school and my professor just linked your original 'My MS Story '. I saw how old it was and had to find a more recent video to see how you're doing... I am SO happy to see you well all these years later!
I'm glad to hear the trail of crumbs leading here from the original video worked out!
MS sucks. This November will be 20 years since my diagnosis. I was 20 when I was diagnosed. I've always been a hypochondriac, so when my vision got a little blurry in my left eye, I went to the doctor. I'm so blessed. My toes feel like they're numb and I'm really tired a lot of the time. Since my neurologist put me on Ocrevus, about three years ago, I haven't had any new lesions or exacerbations.🙏
Hang in! I’m also 20+ years in … wild times for sure
@@metaspencer I hope not too wild. I'm also a hypochondriac... so that's fun. I hope you're doing ok.
The first 12 years or so went well for me but I am playing the "long game". MS is a marathon and not a spring and "results will vary". I also don't think it can be managed just by "this or that"...do I eat good OR take a DMT, do I stop smoking OR workout...You need to do all you can. So I do the DMT (Ocrevus) and eat well, live a clean life-style, be active, etc etc...hope it all works for you without a DMT and hope you don't regret. Ocrevus has certainly helped me as has Ampyra...after 18 years still working, still active and doing the best I can. We all have to do what we can manage and hope it works and we have no regrets..an annual assessment is a good idea...at 18 yrs in this is working for me
I'm glad you've found what works for you. For me, after 20+ years with the disease, it's a different route. Hang in there!
I think what we eat impacts on our health more then we give credit for.
So much that happens in our gut effects our overall health.
Ive def had some MS type symptoms over the years(15 years) It comes and goes, just coming through a more challenging couple of months.
I am very active and find walking for me is very positive. My memory is still good. It effects my eyes, its really weird. I know if I go to the doctors, there will be lots of tests. This illness is not easy to diagnose
as many symptoms mimic other deseases.
I am 70 years old and living my life.I am happy not knowing for now. I have friends with Parkinsons and MS so have good insight what goes on.
Of course it may not be MS!
Great to hear your insights and thoughts! it sounds like you've made some good decisions for sure. be well!
👋, I need to make an updated video myself in a few months
Good idea! Keep us in the loop as to how you're doing!
Thanks for the update! I've watched your other MS Story videos. Glad the diet, Vitamin D and physical activity has worked out so well for you!!
Just last night I went down a rabbit hole re medications for a few differnt diseases that family or friends are dealing with. I ran across a now - off label, experimental drug paper and it sounds interesting - LDN for low dose natrexal (sp?), kind of like the drug use to treat opiate issues, except that a 4.5 mg dose of LDN helps in that "modifying" phase some are touting. Anyway, it might help people on the path to what has worked for you, by getting them motivated (via lowered pain levels) to exercise and eat a better diet.
Thank Spencer, always appreciate your videos and philosophies. Looking forard to the next one! 🎉
Good hearing from you Gina, and this time not regarding a building or tree work video. :) Those rabbit holes you describe can be bigger than expected
Diagnosed 20 years 😅
Then hypothyroidism, I have optic neuritis and PBA.
Then.. I got a diagnosis of crps.
I’m 44 in a wheelchair, and I don’t think I’ll ever be sad that I’m using a wheelchair because it’s how I roll 😊😊😊😊😊
That sounds challenging but WOW you have a great attitude! Stay strong and keep that perspective. Thanks for commenting
@@SpencersMSStory it took a lot of inner work to get me here! I was distraught at first but, in time and a lot of sorting through my feelings I am here now. We have to keep “smylein” 🧡
hello, thanks for sharing your experience. I have been diagnosed just recently but I have had some mild symptoms since 8 years, mostly surrounding vision problems. No relapse, no debilitating situations, no tingling, ... I think it's because I have been a long term vegan !
Can you please tell me how much vitamin D you take ?
Stay healthy !
Go vegan! I completely agree with you on that point as I was also vegan and vegetarian for many years before being diagnosed, and my MS didn't get all that bad (comparatively). so hang in there! Also the cool thing about your diet is that shifting to an anti-inflammatory protocol shouldn't be that big of a step. Anyway yes, that D is important. I take 5k units a day and get my level checked annually. I thought that high amount of D would jack up my levels, but they've stayed in the middle of the healthy range for years. I also take D with K as that's supposed to help with absorption and something else I'm forgetting :)
❤
Hi there. Thanks for sharing your story. Wondering if you did a lot of research into DMTs prior to making a decision not to be on one? I know it’s a big decision to make. I was diagnosed in late 2021 when I had bad ON. I did a lot of research on medications prior to starting and decided to get on Rituximab in Jan 2022 and I also eat better and exercise regularly and have been doing really well.
hello and good to hear from you. I read up on the drugs quite a bit when I was first diagnosed, and wasn't impressed by the numbers in terms of effectiveness. I also couldn't take Tysabri because I have a high JC virus load. At that point I figured "might as well try D and diet first and see how it goes" and I never turned back, as I haven't had an exacerbation since that time. I'm glad to hear you're doing well!
What is JC, please?
@@argentinarodriguez4170 John Cunningham virus … benign in low levels
Odd that you say you are not listening to your Dr. and not getting scanned to know what is objectively truly going on. I would hope that not taking MS slow down meds will not permanently hinder your life more than it is now. I do feel I have befitted a lot from adding vitamin D but I am going to keep taking my MS meds and new ones as they advance considering the side effects each time (no doubt some of the cancer chemo meds were a deal breaker). 18+ years of MS at this point. Hope and pray you continue to be able work and feel well but not taking MS meds does not correlate in objective clinical trials to healthier outcomes. However I am willing to consider diet to be sure and I will look into the diets you mentioned. Pray you do well in your life and health.
I've had MS over 20 years and got annual scans with neurologist visits for several years ... with no changes over many years I'm less worried about it. Your faith in the medications is pretty common -- sounds like you've found a path that works for you through the disease
Snowflake disease. I think I really need to try an anti-inflammatory diet, its just hard with other family in the home. Maybe I'll have a good report next year for you
Yeah changing a diet can be personally hard with habits to break and new foods to figure out, but with a family it's even more challenging. That first year I ate kind of separately from my family, which was hard, but we gradually worked it out. Hang in!
I do have a question that I never seem to get answered on other people's history with MS on other blogs/video's to actual doctors video's. I was hoping someone can answer it for me on here. I'm in the process of being checked for MS but I also have fibromyalgia, my question is does fibromyalgia mimic MS or MS mimic fibromyalgia? I've been reading up on MS and it's symptoms and it's mirroring my fibromyalgia. Could I have been misdiagnosed 12+ years ago?
I wouldn't call it mimicry but many symptoms that appear in people with MS can be caused by other things. Since MS is based on a condition that damages the central nervous system, many other things can also damage that system. So yes, there is a lot of overlap with SYMPTOMS when it comes to MS and other things. Fibromyalgia is often found or diagnosed in people with things like fatigue, pain, etc. Those are symtoms also found in many people with MS. I'm assuming you're on a strict anti-inflammatory diet ... good luck to you!
@@metaspencerthank you so very very much for your reply, I truly appreciate it. At least I have somebody to give me real time experience with MS to understand the differences. Thing's have been getting worse for me over the past year that I can't explain away nor actually blame fibromyalgia only bc I wasn't giving the proper care or thought of beyond fibromyalgia. I'm just going to assume you know there are doctors out there that just want to keep you as a patient for the money instead of actually helping you. This is the state of Florida, I recently had blood work done to get my already scheduled MRI but the doctor's office wouldn't send the results to the MRI facility till I made an appointment with them first, pretty much holding my results hostage. I just got them to send the results (hope they are actually there) Florida doctor's like to play games no matter how serious a test u need to have. Thank you again for replying and for being you ❤️
hang in!
@@rachel7of9
🥰🥰🥰🥰
Love you babe!
Hi Spencer, thanks for the video
I have had symptoms now for about a year I’ve had brain , c spine , thoracic and lumbar spine scans and all are clear of lesions and demyelination, what do you advise I should do? Thanks Paul
Great that you have good scans!! Awesome!!! If it were me I’d check my D levels just to be safe and go on a strict anti inflammatory diet based on whole foods
@@metaspencerthanks Spencer , do you think there’s a chance that the scans don’t show my lesions, just to let you k ow my dad has MS. Thanks
@@hellomynameis5520 unlikely but possible to have MS without visible lesions. Like another cause
@@metaspencer thanks Spencer you look amazing in your videos you are doing great. I guess I have a fear of MS because my dad has it. I hope I continue to have normal MRI’s. Just to let you know I had 1.5 Tesla scanner without contrast, do you think the demyelinated lesions would still show? What scanners do you get scanned with? Thanks
@@hellomynameis5520 3T is way higher resolution… but if you saw lesions or not would it matter? Either way you’ve gotta get yourself well
i was diagnosed on the 19th of December 2022.
Oh wow, it's still very fresh for you! Remember to breathe, stay positive, and slowly soak up that information. Just know that there are MANY of us doing very well with the disease
@@SpencersMSStory thank you ... I take cbd, magnesium, vit D, B1, B12, and omega 3 .
.. I stopped drinking alcohol and stopped smoking .. my neurologist reckons I've had ms 11 years I'm 53 now.
@@dazza0670 sounds like you have a plan and are on track! We're the same age ... lots of good living still to do! :)
@@SpencersMSStoryyes spence I can relate to your videos and thank you from the UK.
Can I ask how much Vitamin D you take per day? Thank you.
5k units daily for 7 years now, but everyone is different and getting the D levels checked regularly makes sense as you can go too high on D
Thank you!
So- without any scans you really have no idea how you are doing...when I was your age I didn't notice the impact of new lesions but knowing they were happening I knew that Copaxone and my lifestyle was not holding me although I wasn't feeling any changes- they were going on and in another 10 years you may feel it..usually 12-15 years after Dx or after you hit 50 years old or so
After 6 or 7 years of scans with no new lesions and being 52 now, I'm pretty confident that no new symptoms = no new lesions. That's my own comfort level; yours may be different
What’s your inflammation diet?
I blend the Wahls Protocol and Overcoming MS diets, which are both designed for people with MS. They focus on whole foods, no added sugars, no processed foods, no dairy, and plenty of anti inflammatory foods like fresh berries, turmeric, etc. No exacerbations in 6 or 7 years now so it seems to be working for me
Ok yeah makes sense. They’re kind of opposite diets in ways though right? I’m guessing you do a little meat (walls)but no gluten? Do u do coconut milk?
@@hankmt4819 Yeah Wahls is paleo so definitely has meat, which I generally don't eat (unless it's rich in omega 3s) ... but I really like how Wahls focuses on getting lots of nutrition through a variety of veggies. There's also the best bet diet for MS if you haven't seen it. Yeah, no gluten for me. When I got diagnosed I just tried to do everything possible to save my ass.
Ok thank u. All that makes sense
👍😀
Are any MS sufferers taking meds. If yes, which ones?
You'll find many lists of MS meds online. Dig deeper and you'll find side effects and potential outcomes. Here's an example of such a list from a pro-pharmaceutical MS organization: www.nationalmssociety.org/Treating-MS/Medications
Number things get off the Standard American Diet. Eat whole food plants eat from the Earth 🌎. SOS FREE.
You said it. That standard diet is a killer
Spencer you haven't mentioned God in all this,I feel that He has had a hand in this!
As an atheist I don't share your perspective, but I appreciate the optimism!
Science has had a hand
i wonder if you were misdiagnosed and never even had ms
The lesions on my spine say otherwise. Many others with the disease have a similar experience with the disease after getting on an anti-inflammatory diet
A complete MS diagnosis needs lesions in at least two places on the central nervous system: Brain, c-spine, thoracic spine. High O band counts in spinal fluid, too
There are many stories like this. We should be inspired and happy for such not skepticism. Joyous ❤
Reputable neurologists are still using o-band counts ya think, even with solid MRI data at 3-tesla and narratives of persistent symptoms?