I dont have MS and I dont know how i ended up here but i definilty loved your video it was so informative and I wish you all the best in life and I hope you live a long and healthy life. *Knock the wood* greetings from IRAN 🇮🇷
Hello and great to hear from you! I appreciate the warm wishes and also hope you are doing well in Iran, a country I have some old friends from but have never visited. All the best! :)
Spencer, this is a wonderful video diary. Your third year sounds like a negotiation with the inevitable anxiety that comes with radical contingency. I am so impressed that you are in remission. You figured out how to treat your body and I look forward to seeing what techniques work for you when it comes to mental suffering. Life is suffering, as not you and all Buddhists say. I’ve really appreciated your support; I truly believe that your kindness has a protective factor.
Lisa! So nice to hear from you and to know that you're still getting my pings when I post things online. :) I feel like as long as I'm in process and not staying in one place, there's a possibility of some progress or change or whatever. I'm always thinking of you guys
Thrilled to hear you mention Vitamin D. Turning shower to cold water as long as you can stand it especially in the summer time will increase glutathione production to fight disease also.
Hello!!! I was diagnosed in 2000 and I literally have had this for two decades!! 18yrs old fresh out of high school!!! I understand what you mean by a disease of the mind, and the fear of the WHEN. I have been on DMTs injections, pills and infusions at this point and I live every day pretty much pushing the fear out of view!!! Warriors in this whole MS together!!!
My first "My MS Story" video is here: ua-cam.com/video/zw5pPojRFRU/v-deo.html ... My second one is here: ua-cam.com/video/qhQLzv67Nlc/v-deo.html ... My 4th one is here: ua-cam.com/video/28CJb48KAjw/v-deo.html
I know what you mean about it being a battle of the mind. My husband has epilepsy and it’s a very similar thing. High anxiety. Always a nagging fear of what would happen if he seized in certain situations. I worry about him almost all the time. And I’m not even the one who has the seizures so I’m certain it’s an even bigger mental struggle for him. We try to live a life that shows no fear, but it’s still there always in the back of the mind. Everyday, all the time.
I have a good friend who has epilepsy, so know what you mean: it can be a constant worry. I guess my goal is to worry less without being in total denial! :) great to hear from you
I had a tumor removed from my head when I was a child and have had a lot of hearing loss from it. 6 plus surgeries from that, plus other medical problems about 15 total surgeries now. Lost the use of my left hand from one of those surgeries & have bad nerve pain as a result. I also survived a fullbown DVT into a Pulmonary Embolism(blood clot travelling into the lungs) which kills 2 out 3 people. I am the one survivor. I survived because I, rain or snow, *bike every single day. I also quit smoking back in 1996.* I always thought I was dealing with my medical load well until I had a breakdown 2 years ago. I don't even know how to explain it other than this: I would have never dreamed my anxiety level was building and building, often silent inside, until I had some serious troubles. I knew my life was not "normal" but what is that? I know my anxiety is very different from yours but I definitely understand what you mean by you saying its an illness of the mind. That part is huge. I am still sometimes dumbfounded by how it effectively cut me off at the knees without actually being anything particularly tangible to treat. This post of mine could go on for a long time so I hope this succinctly gets my point across: There's no shame in getting help for a mental condition. Better safe than sorry.
Wow, super good to hear from you. Reading what you've written, I can't help but think "Wow, the human spirit can be completely unbeatable!" No doubt about it: you've been through some stuff! And I feel like our stories connect in tons of ways. Melissa and I walk daily, rain-or-shine, and it sounds a lot like your biking. Just keep moving, I always say, and it seems to work in all sorts of great ways. Great to hear from you. You've given me some stuff to think about. Hang in and keep it up!
I have MS for 18yr . For the last few months I am done with meds. What I have notice that stress did effect me. I love this vid I wish you continued health.
found your channel from tree stuff - got an MS194T a while ago - had no idea of your condition. I will pray for your health and peace. May the Lord bless you and keep you, and make His face shine upon you.
Massive respect! Knowing your condition, you're doing extremely well. As long as you maintain the good attitude to the situation, it'll be better. Thank you for sharing your story. It might be very helpful for other people with ms.
Wow , you blow me away.!!!! I started watching your other Videos on your Prison Bus Build and now I feel " Oh my god I never knew you had MS. and what you build is just great. Hope you can still be strong , you are amazing. !!!!!
I’m glad you’re doing great. And no new flareups. My sister thinks she has MS! The doctors have talk to her about it. She’s gone through so many problems in her lifetime. I’m just glad I came across you and you’re doing great. God bless
My mother's nearly thirty-year struggle with Parkinson's has drawn me toward all kinds neurological diseases, and in understanding how they effect the lives of those who confront them (patients, and their families/friends). Not to make light of anyone's struggle (because it certainly can be), I think in some ways, I'm attempting to understand my late mother's condition. I appreciate your candid nature. Thank you. P.S. FORTY-SEVEN?! Whatever you're doing in that department, keep doing it! Clearly, it's working. 💪👌
As most folks seem to come to these videos because they have MS themselves, it's interesting to hear your route in. Sorry to hear about your mother -- sounds like a rough journey. Take care. :)
I've been following your videos for the last 2 years, and I feel a connection with you and your outlook on MS. It's very similar to mine. Right now, we're in the process of getting me diagnosed. However, my symptoms are so strong that the Drs believe that it's MS. I've had symptoms since my teens. I'm 47. The last two years have been seizures, vertigo, extreme heat sensitivity, tics, drunk walk, eye pain and high sensitivity to noises. It's been a struggle, but I've stayed positive. I'm also going the natural route. Diet change, herbs, Vit D, B, etc. Thanks for your positive outlook.
Dude been following you a while now. I've had MS for 21 years. Never knew you had it as well. I feel ya. Ever wanna talk let me know I'm always around.
No reason to worry at all. keep on not worrying. It definitely does more harm than good. If you ever want to go camping or hiking/Fishing let me know. You have the right mindset for activities for this kind of situation. It is all mental, no doubt about that.
Thanks for sharing your personal story! Started tuning in a short time ago, after getting my own bus, and have garnered a lot of great info. Much respect! Keep marching on
I am on my journey, too. Thank you for your videos and your voice. I can relate to all you say. I am also choosing to not take the drugs. God bless you. Thank you.
I appreciate these updates of your MS journey. They are comforting to me just hearing someone else going through some of the same experiences That I am. I haven't been diagnosed yet, which is frustrating because I've had this for many years..thanks for the videos, they help.
Thanks for the feedback -- it's nice to hear the videos make some difference. As you probably know, I went many years before being diagnosed. Looking back I guess I wish I would have adopted the anti-inflammatory diet earlier ... but other than that no regrets. Hang in there ... it's almost time for me to post another yearly update! :)
Thank you for this awesome video. I was diagnosed 20 years ago. I’ve adopted much of the same philosophy as you have. No disease modifying drugs either. I believe everyone is different with MS. We are all on our own journey. Like you, I eat a healthy diet, take supplements and exercise, most everyday. I also understand that the MS drugs help many people.
Well, I'm sorry to hear you're struggling but hope you get some answers soon. Note that even if you don't end up having MS, getting your vitamin D levels up (if they're low) can be helpful and preventative. Hang in!
I have the same fear of waking up one day and not being able to walk. I totally understand. MS really messes with your mind. Thanks for documenting your MS story!
@metaspencer I was just diagnosed with MS 5 months ago and so far my experience is very close to yours(2 years ago). I've had it for 10 years apparently with out knowing. One doctor wanted me to quit my occupation because he said I have aggressive MS and I needed to get on a serious treatment. However other doctors said it wasn't a big deal. Not knowing who to believe I decided to try altering my diet but I'm not sure that helped entirely either. Seems like the only thing that truly helps is to get at least 6 hours of sleep a night, eat what I want and to avoid "stress". I put "stress" in quotes because turns out that's a relative statement. Certain things that stress people out don't bother me and vice versa. I did not quit my profession. I left for a world tour with my band ANDREW W.K. 2 months ago and when all is said and done will publish my findings. Your video was inspiring and motivating. I agree MS may be a mind thing. Thanks for telling your story!
Very cool to hear a bit about your story! I know what you mean about stress being relative and different for everyone ... I also go for lots of sleep and mellow living. The inflammatory diet can't hurt. Hang in there! I also had doctors say my future was very bad, but so far I've only improved
Hey, great video. I share your opinion of DMD’s and I also get a lot of hassle from people saying I should be taking them. Most of them lower your immune system which worries me. I also totally get your fear and anxiety, my last attack crept up slowly in summer of last year. It has nearly almost completely wiped out my walking. I’m now seriously looking at purchasing a mobility scooter to maintain my independence. This is having a massive impact on my psychologically and It’s taking a long time coming to terms with it. Take care.
I too have appreciated Neil's vids and yours Spence. I hope you don't allow M.S. to become a Prison Bus, transporting you to a cell that you don't want to go. Per the mind, I've noticed that M.S. is not a condition (for most) where one wakes one day and find that he, or she can't do this, or that, but it is a gradual erosion. I offer, no advice, because you seems to be a thoughtful man. I can tell you; however, that M.S., although not seen on imaging, is still active at the axonal level. Nothing to be afraid about, just something to consider. Here's a thought with regard to gradual erosion, although a bit anthropomorphic. At what point did the Grand Canyon become Grand? Best wishes
Thoughtful and interesting to read. Regarding the visible scans: yes, they are a crude measure of a disease that works at the cellular level, minutely and imperceptibly ... until you feel or are hit by the damage. For me, the two decades I've had it haven't made a grand canyon ... but it's clearly wearing away at my nervous system. So I try to live in the moment and appreciate what I have. Great hearing from you! :)
Thanks for your reply. I was diagnosed in 2000 at the age of 35. You seem to be doing really well and I can tell you've got an organized mind and a plan. I'm sure you've heard that M.S. is a "snowflake" condition, because we all have different issues. Social media has helped me feel less alone. M.S. works on my mind too, but I'm a little camera shy. I benefit from you and Neil who are open. I try to make a few comments now and again. Keep up the good work. Keep calm and carry on. That's all we can do. Cheers. John, Seattle, WA.
Thank You for Sharing Your Story and Honest feelings and fears. I freak out too. Not on any DMT. I've tried 7 and all failed me, made me worse.. Diagnosed 1/22/2015 at age 49. 14 yrs to get diagnosed from onset of 3rd nerve cranial palsy January 2, 2002.
Wow, we have some things in common! I haven't taken any meds and prefer the anti-inflammatory diet ... I hope your MS has mellowed. The dang disease can sure be unpredictable. Hang in
metaspencer I came across your video when searching information on optical neuritis which I was diagnosed with 3 days ago I've had issues for about a week and I've had issues throughout my whole life I will have an MRI on Monday to distinguish out if I have MS or not hopefully I don't but most likely from what I've researched I might have it. Either way I have been dealing with it off and on my whole. Nothing new here. I hope you have a good weekend and keep posting videos!
Hey man ... I was just checking out your climbing videos and oil change vid ... I have a Crosstrek and ended up putting on one of these dealios so as not to have to replace those crush rings (amzn.to/2G2hWbc) ... but that's an aside! I'm sorry to hear about your optic neuritis. I've had it several times now, and it's always presented in slightly different ways: once just pain without visual loss, the other times with less pain but more vision less/degradation. In my cases, the vision has returned afterwards, and I hope the same for you! Rest helps, of course, and getting any possible swelling/inflammation down is pretty key. I know what you mean about having symptoms for a long time: I also was living with stuff for almost two decades before a diagnosis. Well, I'm wishing you the best and hoping its not MS but just some idiopathic fluke. But either way, you'll be good. You're obviously a strong dude! :)
metaspencer thanks for the input on the oil release valve that's so neat I am going to order it and have it on hand Incase I strip mine again haha. How long did the optic issues last? What did you eat or do to alevate it? I notice by working out it tends to go away or deep breathing helps.
haha, look at us talking about oil changes when your dang eyes are messing with you! Each time I've had optic neuritis it's lasted a couple of months, sort of fading in over a week or two and then hanging around and only gradually getting better toward the end of the couple of months. Now, I haven't had any noticeable MS exacerbations for the past 2+ years, and that's the time that I've been aware that I have MS and clued into the various anti-inflammatory diets and whatnot. So when I had the various bouts of optic neuritis, I just rested up. Others do steroid infusions. My perspective on alleviating symptoms is that you can't always control them. With that said, if it's actually MS that's messing with your eyes, you may want to make sure your vitamin D levels are up there (low D can lead to exacerbations; that's agreed upon in the literature). What's less agreed upon are things like: reducing stress of all kinds (psychological, physical, etc.), not eating things that might inflame your system (gluten, refined sugars, alcohol, etc.), and then even avoiding heat and the cold. So for me, I'd say that if you have MS there are many things you can try to do at this time, with this problem ... but I would be cautious of blaming yourself or thinking that everything is in your control. Anyway, I obviously have a lot to say ... :) The main thing: hang in there! If you wan to chat by phone or email or whatever, just ping me
I admire your attitude. I’ve been having many major symptoms myself and I’m waiting on a diagnosis. If I am diagnosed with MS, I’m also hoping to not take meds if possible. I’d prefer a natural approach. Stay strong!
Hang in there! There are many, many of us doing well with the disease ... in advance it might help to keep you vit D levels up and switch to an anti-inflammatory diet. Be well !
Thanks for sharing your story! I've been recently diagnosed with MS and searching for people's expirience with this desease and variations of symptoms. Hope that we'll fight it well and will live a full and healthy life!
Hang in! When first diagnosed there is just sooooo much info to take in. It's important to stay optimistic, I think, as the disease has been managed by many of us. I've got some more MS videos over here ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html take care
Spencer, I remember watching your first MS story and everything that you went through diagnosis wise and symptom wise I am going through now for two years. I have had four clear MRI’s and have seen four different neurologists and all have said my condition isn’t MS based on my MRI’s. I have these attacks where I feel like someone is squeezing me tightly around my rib cage as well as numbness and tingling in my arms, legs, and feet. I think the worst symptoms I have are terribly painful leg spasms and the hypersensitivity to hot and cold temperatures. I get this electrical sensation in my neck that travels down my spine as well. I have had a total of 184 different blood tests done in the past two years as well as eight hospital admissions. Anyways so sorry for the long story but you have inspired me so much and I admire your approach to MS as well as your positive attitude. To go as long as you did with your symptoms after two decades just proves how tricky MS can be. My GP is thinking I may be headed down that road as well. Thank you so much for sharing your story and for the updates. I’m going to start taking a vitamin D supplement to see if that helps me. Again thanks so much and take care of yourself!
My Neurologist is set that I have to take a drug regime. Over the 20 years I have had symptoms I have tried so many that only had horrible side effects. Thank You for your thoughts and experiences. ❤❤
Many neurologists get paid by pharmaceutical companies. I'm not surprised this is the recommendation from the doctor as we've all heard the same thing. Fortunately there are other options for you that have worked well for so many of us
I'm a firm believer that EVERYTHING has a cause. Once we all can figure out what is the cause of our diseases we can heal. Diet, injury, toxins, stress, etc. There has to be a reason. We don't just wake up one day with ALS, MS, etc. If only we can find out what triggered it.
metaspencer I like to think that we don't have to suffer. I think our bodies are capable of healing themselves. Just think about any other time you've been wounded or sick. Your body recovered. It may be a very complex and in depth process but I believe it can be done. Many people have used fasting to overcome illness and disease. If you haven't given water fasting a try I'd say please look into it.
metaspencer by the way you are an inspiration. Thank you for what you do. I haven't been diagnosed with ms but I have a lot of the symptoms so I'm getting myself prepared before hand. I do believe that The Most High will heal me.
Oh yeah, I totally agree: attitude, mindset, and desire matter so much. People defeat themselves in their mind first, most often. With that said, I know that we're also not in control of everything in our bodies and experience.
I really like your videos, you have a great personality. Just found your videos about a week ago and subbed your channel. I have been binge watching them though I still have many to go. I have a autoimmune disease and it's a struggle everyday, but I don't let it slow me down. Your going to be ok! Keep the videos coming. You make me laugh......"what's up with ground crew? Probably on the bus smoking crack" best wishes!!!
The best thing I read right there in your comment is that you don't let it slow you down! Most excellent! Great to hear from ya and thanks for the boost of support :)
Привет Спенсер. Hi🙋😃В России появилась возможность смотреть видео на English английском, поэтому я нашла тебя . Я тоже живу без ПИТРС 21 год с ms.(В России это РС). Ты все делаешь правильно, как и я. Нет тревожности - нет осложнений!!! 🙋👍👌😃😃😃Удачи в Пути!!!
I'll be posting the next update in March of 2020, as I did one last March ... and things are still going well (knock on wood) even though I've had some big changes in my life. Thanks for the encouragement!
Tiffany Serina he is awesome 👏 I’m 44 with Muscular Dystrophy n I know it’s hard I’ve lived with it for years I can no longer walk life has been very challenging but I try to stay positive n stay out of a 4 year depression I was in, videos like these inspired me to be ok with my body and all the changes n pain I’m in I was embarrassed my whole life, but no more! I recently opened a channel in hopes my story helps others like so many others helped me, I still have days I cry every night but I just hold on to my faith🙏🏼I pray for everyone hurting n asked to plz come visit n get to know me on my UA-cam channel @yanet Cortez hope to see you guys there I tell my story but also alittle of my life in hopes it keeps me positive n looking forward to another day I’ve come a long way from being shy to putting myself out there I pray for health kindness n support 🙏🏼 plz leave me a comment so I can thank you😘n thank u to the gentleman in this video hope your doing well hope to hear from u soon.
metaspencer hi I’m 44 with FSHD diagnosed at 9 I’ve tried staying very positive through this but it wasn’t until I saw your video that made me realize I could do the same n try to help others with not only my story but by showing that life is hard n very challenging not only physically but emotionally as well but that through it all I will make the best memories n do n see whatever I can now! N I want to bring everyone with me 😂 if not we’ll then at least I’ll have something to leave my kids n grandson lol hope to hear from u or see you on my channel😘
Hey Spencer, found your story, thanks so much for sharing! I was just released from the hospital and diagnosed with RRMS 03/10/2020. I was amazed to hear your story and how closely our stories match! I have a lot of up and coming decisions to make in regards to treatment etc, but favor the route you have taken. Your last update was 2018 on your story and was wondering if you're still on your same path without medication? I see your other videos and it looks like your doing great! Love the attitude you have! Would love it if you could do another update on your story f you have the time or willing to share. Thank you again for taking the time to share your story, and for the time you take to share or your project videos etc.
Hey Blake -- It just so happens that I dropped my new annual video just last week ... this link should get you there: @ Man, I'm guessing everything is all very fresh for you, with that recent diagnosis, and there is a LOT of information to take in. I'm completely convinced that FOR ME, not necessarily everyone, this anti-inflammatory diet + low stress + rest + vit D = the way to go, as I'm 4 years into a great relapse doing that stuff. Anyway, good to hear from you, hang in, and feel free to message me over email or instagram or facebook or whatever. it's always nice to connect with folks with similar stories because we're not alone, man! be well
Thanks so much for taking the time to reply! I must be doing something wrong. I see your play list and it shows that it was updated 7 days ago but there are only 5 videos 3 stories and 2 about cooling vests and the last MS story filmed that I can see on the playlist shows from March 12 2018. I personally don't have any social media accounts so I rely a lot on youtube. I absolutely agree with the power of diet and just downloaded Dr. Terry Wahls book to read. Thanks so much again for putting yourself out there and sharing! I absolutely love all the positivity!!!
@@blake1739 my stuff on UA-cam is kinda confusing because I have a couple of channels ... but most of my stuff is here: ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber
if you search youtube for "spencers ms story" you'll find my MS channel ... most of my stuff is on my "metaspencer" channel, hence the confusion. anyway
I have that same approach to worries about the future. I try my best not to worry now because that makes no logical sense, I could die tomorrow in a car crash or something. We only have the present moment, and it's unreasonable to worry about the past or the future. If I get a huge relapse, that's when I'm going to be worried, but not now.
Thank you for the video. How are you doing right now? I have a question. Im 24 year old male and i have symptoms for 10 months now. First i was worrying about my colledge exams and then my BP jumped to 160/110 and i ended up in ER. I was worried sick about my heart and BP for months and THEN, i starting having all kinda of symptoms that look like MS to me. The symptoms are (it’s long): Head: Tingling Numbness - (out of the blue for a few seconds, off and on) Tension headaches or maybe migraines - ( that last for 5 days) Face muscles twitching Face tingling Eyes: Dry eyes - (sometimes it gets really bad) Eye pain - (pain behind the eye that randomly comes and goes, it lasts for days to a few weeks. Been to eye doctor, she didn’t see any neurological problem there. Just dry eyes) Eyes burning Feeling like there’s a mint in my eye - (cold feeling) Eye floaters Sensitive to light Eyelids twitching Blurry vision Neck: Lump in the throat (comes and goes) Arteries strongly pulsating ( is that normal? ) Arms: Tingling Numbness Pins and needles Burning sensations Muscle thightness Muscles twitching Occasional tremors Legs: Tingling Numbness Pins and needles Twitching Occasional tremors Weak legs (sometimes i feel my knees are going to give up on me) Calf thightnes Tense calfes Calf pain Knee pain when sitting for a long time Knee “clicking” when walking down the stairs Foot vibrations - (like i put my foot on something that is vibrating under me) Foot pain Back: Back pain in the left side Feeling like someone poked me with the finger in the left side of the low back Random hip pain Left butcheak tingling Internal tremors Palpitations Muscles: Sore muscles for no reason Random shooting muscle pain - ( super scary) Twitching Weakness Bones and joints: Random joints pain Random deep bone pain Digestive problems: Constant heartburn’s Bloating Gases Watery stool Going to bathroom after every meal - (3-4 times a day) Deep pain in my colon - ( it lasts for a few seconds and it’s terrible) Feeling like my colon is twitching inside - ( really wierd, scary and uncomfortable) - IBS.?? Bladder issues: Frequent urination Pee “dribbling” after i finish urination - ( I always have a few extra drops in my pants) After peeing feeling like there is something twitching inside (prostate or bladder it’s super scary and wierd) Mind (after few first symptoms appeared): Thinking too much Worrying too much Googling way too much Feeling distant Feeling exhausted for no reason at times Confusion Feeling tired Forgetting stuff Thinking about MS all the time 90% of my symptoms come and go but the one that persist is my left leg (knee, under thenknee, calf) hurts and feel weak, feels tingly and numbing. Both calfes are actualy very stiff and painful like i was running. Also as my left butcheak si tingling. I had 2 MRIs of my head and 1 MRI of spine and it’s all clear. But people say that MRI can be clear for years and you can still have MS. What do you think? Could this be bad anxiety (since it started with anxiety) or is it MS?
First, I've just gotta say that I'm sorry to hear you're suffering. Any amount of poor health is challenging, and you clearly have a long list of challenges. If your MRIs of the brain and spine are all clear of lesions, that's certainly a good thing and not to be discounted. Yes, it's true that imaging technology like MRI can be inaccurate and unable to detect some disease activity in MS, but that is pretty rare. If I were in your shoes I guess I would do two things: 1) pursue wellness as actively as possible (diet, rest, exercise, etc.) 2) schedule appointments with specialists in the various areas of your symptoms if possible with your insurance and health care. Good luck and hang in there!
metaspencer Thank you for the reply. I am new US citizen and i don’t know anything about health insuarance. Which one do you use? Do you have free check ups or cheaper? Like for me example, in case i go to doctor and tell him about all this, he decides to send me to another MRI, how much will i pay? I’m short on money at the moment. I don’t know what to do with this.
you look tired and less energetic than in your previous 2 videos. Still have to watch your next 2 years video. Hope your doing well. Thanks for sharing and keep strong.
Hi Spencer,glad to see you in good conditions!Wish you health in the future too! But what about stem cells procedure?Are you try it? I hear good words of that ,but don,t have enough info!
If I were having problems I would consider stem cell therapy, but I'm doing very well 20 years into the disease. We'll see what the future brings. T'hanks for the support
Its hereditary if you go to MS specialist in very beginning he knows what it is right away However we need MS specialist even later on Naturopath doctors is very helpful to Kenneth
@@metaspencer Hi Spencer actually my neighbor who is MS specialist Gave me some real important information A two other good frends who also doctors told me same thing It is hereditary But I also heard that even one parent has heart related problems there child can have MS because thers connection So it's not the all other things we here about it's hereditary But my regular neurologist never told me this My question Spencer why do think there withhold some important information They act like they dodnt know a big mystery or its diet to much stress Why dodnt they want us know But I found out threw close freinds neighbors and family doctors Also allergies have a connection MS also hereditary We have over active immune systems but we dodnt feel that way!! Have a wonderful day Spencer talk you again 🤗
I belong to a few of those MS groups too. They can be benefitial. Keeps us from feeling alone in this battle. Physologically MS messes with behavior, puts fear the of what "could" happen if we do things. And it COULD happen. If you lead a stressful life, chances are, you will progress faster. So we end relationships because they are toxic. Etc. Like me, I avoid going out alone now, because of all the symptoms I get. Tottally sucks.
Thanks for the encouragement! Yeah, I've been posting an update each year ...here's a link to thenext one and in the info section there are links to the next ua-cam.com/video/28CJb48KAjw/v-deo.html
I am in a relationship with a girl who just told me about her MS condition. Frankly, I hadn’t known anything about MS before meeting her. Now I am doing all I can to educate myself and help be by her side. You guys are truly warriors; the more I read more and unlock info about MS, the more inspired I become by your resilience
@@metaspencer this is exactly what she told me; she has an unwavering show of resilience and determination; thank you for your videos and I wish you all the best 🙏🙏🙏
Hi Ghizlane -- by "HCST" I'm thinking you're talking about stem cell therapy? For me I don't have any need since my anti-inflammatory diet and vitamin D have completely controlled the disease.
Can you explain more about the numbness? You said tingling and numbness. Was the numbness true numbness where you couldn’t feel anything at all? A lot of people say numbness when they really mean tingling/pins and needles.
For me numbness has been no feeling in the skin and reduced sensitivity in neuro evals. Tingling, pins and needles, cold and hot sensations have all happened too as well as hyper sensitivity. What fun! Fortunately the anti inflammatory diet saved my butt
Hey, Spencer. I was diagnosed w/ MS last year at 38 yrs old. I’m a part of a few & have been looking into more online support groups, but I haven’t come across the one in particular you said that you liked on FB. Do you mind telling me what the name of it is? Keep up the positive & good energy, man! 🤘
Hey, good to hear from you! The one I mention in the video is now called "Kristin's Multiple Sclerosis support" on Facebook. The Kristin part was added just a week or so ago when one of the original members by that name passed away. Do you have names of other groups I might find interesting/useful? I'd like to find others for sure ... take care!
Thanks, man! I find myself going to the My MS page a decent amount. They have an app also, but I don’t find it very user-friendly. You can sign up & log in through the link on their FB page which, I believe, is much easier. You can log what type of MS, what therapies/medications you’re on, how well they are doing for you, & (most importantly) connect/give advice to those affected in the MS community. If you do happen to sign up, you can find me on there w/ the same username I use here in UA-cam. Take it easy & fight on, man!
Hi Spencer, I am a 59 year old male, I was offically diagnosed with RRMS last October 2017. With my first "known" symptom in 2002(optic neuritis). What exactly is the Facebook groups name? "Kristin and Tracy's Multiple Sclerosis Support Group" 23,671 members? I am assuming that might very well be the one, with 23 plus thousand members. Thank you the information, I am very interested in joining this group, Jim
Howdy! Yes, that’s the group. I recently took a break from that one and am more in MS Hope, a smaller group all about dietary approaches. Anyway: hang in there man! MS is tough but you’re tougher
Oh excellent, thanks for the encouragement! I continue to thrive and do pretty well ... I'll likely post the next one in March, so it's a few months off. Still trying to stay in the present. Thanks!
hello spencer, when is your most up to date ms video, have i missed it? i seriously think (from doing a whole lot of research) i have ms and i will be seeing a neurologist some time soon (hopefully within a week)
Hello! You'll find my most up-to-date videos and annual updates over on my channel dedicated to MS stuff. Good luck with your doctor's visit! ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.htmlvideos?view_as=subscriber
I have a neurology appoint 6/27 and we are thinking that I have MS. I have had just about every test imaginable and of all the symptoms that I see I am going through all of them. Do you have any advice?
Hey Patrick -- If it is MS every case is a bit different. With that said my advice would be to 1) pay close attention to the background of this neurologist. If it's someone who specialized in MS that would be more reassuring than a neurologist who focuses on sleep disorders or strokes. 2) note that you have a lot of decision making power. what you do with the info you get is up to you. If you do have MS I guarantee you that the neurologist will try to put you on powerful medication/drugs. that is your choice. 3) if it is MS I'd spend some time reading about the importance of vitamin D and an anti-inflammatory diet. For me and many others D and diet have put the disease into complete remission. Hang in and say calm! This is surely a stressful time.
my son is 16 and was just diagnosed with MS. He just woke up one morning and went to get out of bed and fell his left leg was very heavy then the next he complained about his left arm being numb so I took him to the doctor they sent him straight to the ER did a MRI and he had an old lesion on the left side of his brain and an active lesion on the right. they sent him in an ambulance to Norton's Children Hospital in Louisville and they diagnosed him with MS. He was transferred to rehabilitation institute and we are going home tomorrow. He has gained all of his mobility Back with therapy. I know they are going to try to put him on some kind of medicine so I'm torn as to what needs to be done it's my decision since he is a minor. i just don't want to make things worse for him with drugs that not gonna cure it. so that's how I found this video.
Hi Lisa! My heart goes out to you, as that's quite a powerful story and hard situation. I know that if my son was having trouble (he's 21), I'd be struggling in similar ways. The positive things I can tell you is that many of us are living long and very healthy lives with this disease. The other tips I guess I'd suggest you look into are relating to the power and importance of him maintaining high vitamin D levels (everyone agrees on this) and considering an anti-inflammatory diet (not everyone agrees on this). Check out Matt Embry's stuff online if you're interested, as he has a story that might be a bit similar to your son's in terms of gender and age. Anyway: hang in there and take things slow! He's got a lot of good living ahead of him!
I’ve not been diagnosed with anything. I had symptoms 2 years ago but had a clear MRI... I still have symptoms, but follow a non inflammatory diet...have elevated my Vit d...take flax oil etc... and the sensations I have are kept to a minimum... who knows, but I would wager money that at some point... I will be back in there again.. You gave a brief list of your changes 2 years ago..... if I was a betting man...I would say the Vit d is probably the active ingredient in you regimen. What dose are you taking? I’ve read a lot about Vit d supplementation and the Coimbra protocol seems like an approach that all should follow.
Hey, good to hear from you. Yes, vitamin D is pretty crucial to me: just about everyone who studies MS agrees that low levels can lead to exacerbations and problems. When I was first diagnosed my D levels were way below normal. I've been taking 5k units daily every since, and I don't get much sun ... so that keeps my levels much higher. You don't want to overdose on D, so I get my levels checked annually. The anti-inflammatory diet I'm on might be helping, might not ... but I don't think it hurts. It's interesting to hear your story. Hang in there!
I've had MS for 8 years, diagnosed 1 year ago. I'm getting a lot of help from an old Thai buddhist bodyworker. I complained to her about my risque of being in a wheelchair a few years from now. She was like: "Anyone could be in a wheelchair a few years from now. I could get run over by a bus this afternoon. It's useless to worry about it now. Everyone gets sick too." I suppose she's right. Right?
I really like that perspective. Fearing the future is something a lot of people do; having MS just makes those fears a bit more specific. Living in the moment is an art I'm certainly working on. Hang in there, by the way!
How are you now? I have been diagnosed with Multiple Sclerosis lst month only...after an attack with my right limbs... its remission time now...going good. What to expect within 5 years?
I'm doing really well: no exacerbations for nearly five years now. I have several follow up videos on my MS channel at ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.htmlvideos?view_as=subscriber ... I wish you the best! Personally, I plan to stay healthy for another 20 years
@@metaspencer that's great to hear.. cheers for you !🍇 With my short experience, I think positivity has a good role to play in MS. Thank you sir. You made me calm!
Watching your video I would have never guessed you had anything a former girlfriend has it and another friend has it but it hasn't stopped them I thought it be cool just to hang out you and work on the prison bus
You can email me at metaspencer at gmail.com or message me on instagram or Facebook (metaspencer again). Hang in there! I know it's scary but keep in mind that many of us with MS live very great lives! Be well
@@metaspencer Thanks, I was diagnosed in February, after not knowing what was wrong for 10 years. When you can't work everyone just assumes you're lazy. Thing is, I worked harder than everyone untill I couldn't anymore. I did landscaping. I'm 48 and never had internet. Only got it to study M.S.. Can't believe you replied to my comment. No one has ever replied to me, up until now. Thank you! The Corona Virus scares me so bad, I don't want to go to Dr. appointments, psychiatrist, etc.. Just trying natural remedies, but the mental stress is brutal. Anyway, your words of encouragement were a very welcome change. Thanks again.
Yeah, it's both a promising and serious procedure. I've looked into it quite a lot. With very few problems at present, it's on the back burner. Thanks for the note.
I did it. It's a life changer. I'm all most exactly like you. I'm 46, was recently diagnosed, am thin, had minimal symptoms, yada, yada, yada.... My Wife found it and all I had to do was pick a location. I thought about Northwestern, talked to them but was told they wanted to have me try some medicine first so I elected to leave the US. There are multiple places to choose from. I'm just trying to help. You can decide what you want. Let me know if there is anything else you need.
Oh, and it's not serious. Trust me. I know it sounds serious, but it's not. Yes, there's chemotherapy, but it's not really anything. Again, it's your call.
For me, a lot of my flare ups have not been painful as much as debilitating: so things like vision loss or loss of feeling. The thing I've learned about MS is that we all experience it very differently, as the nerves getting attacked can have so many different results. Hang in there! It sounds tough.
Seems pretty logical to have a monster following you around and having anxiety about it. Have you tried CBD or marijuana? Doesn't help me but seems to help a lot of people.
I haven't tried either of those, but have also heard largely positive stories. For me, so far, it's all about rest, exercise, low stress, following the anti-inflammatory diet, positive attitude, and all of that.
I got MS diagnosis 2 years ago I have no problems but I'm worried about the future so I'm thinking of committing suicide because I don't want to be disabled😔😭😪😪
@@ramazan9857 For me it's just been simple: a strict anti-inflammatory diet of whole foods and vitamin D. Low stress seems to also help. Rest, feel good, you've got this!
That's because there is no known cause. Incidence increases farther from the equator and women get it slightly more frequently than men, but there is no known cause. Even Epstein-Barr has a correspondence but not 1:1 causation
I dont have MS and I dont know how i ended up here but i definilty loved your video it was so informative and I wish you all the best in life and I hope you live a long and healthy life. *Knock the wood* greetings from IRAN 🇮🇷
Hello and great to hear from you! I appreciate the warm wishes and also hope you are doing well in Iran, a country I have some old friends from but have never visited. All the best! :)
I thought you were a Cool person before but, now I know you are a Badass Cool person!
haha! thanks, man. That means a lot :)
Spencer, this is a wonderful video diary. Your third year sounds like a negotiation with the inevitable anxiety that comes with radical contingency. I am so impressed that you are in remission. You figured out how to treat your body and I look forward to seeing what techniques work for you when it comes to mental suffering. Life is suffering, as not you and all Buddhists say. I’ve really appreciated your support; I truly believe that your kindness has a protective factor.
Lisa! So nice to hear from you and to know that you're still getting my pings when I post things online. :) I feel like as long as I'm in process and not staying in one place, there's a possibility of some progress or change or whatever. I'm always thinking of you guys
Thrilled to hear you mention Vitamin D. Turning shower to cold water as long as you can stand it especially in the summer time will increase glutathione production to fight disease also.
I didn't know about the glutathione but I do know that I only do cold showers in the summer ... thanks!
Hello!!! I was diagnosed in 2000 and I literally have had this for two decades!! 18yrs old fresh out of high school!!! I understand what you mean by a disease of the mind, and the fear of the WHEN. I have been on DMTs injections, pills and infusions at this point and I live every day pretty much pushing the fear out of view!!! Warriors in this whole MS together!!!
sounds like a rough road. I hear ya! 5 years without an exacerbation for me, so I'm feeling lucky. be well and hang in!
@@metaspencer I think we are all trying to hold on! Literally!! Super glad you been so well!!!
I am glad you are able to manage your MS.
Thanks!
My first "My MS Story" video is here: ua-cam.com/video/zw5pPojRFRU/v-deo.html ... My second one is here: ua-cam.com/video/qhQLzv67Nlc/v-deo.html ... My 4th one is here: ua-cam.com/video/28CJb48KAjw/v-deo.html
I know what you mean about it being a battle of the mind. My husband has epilepsy and it’s a very similar thing. High anxiety. Always a nagging fear of what would happen if he seized in certain situations. I worry about him almost all the time. And I’m not even the one who has the seizures so I’m certain it’s an even bigger mental struggle for him. We try to live a life that shows no fear, but it’s still there always in the back of the mind. Everyday, all the time.
I have a good friend who has epilepsy, so know what you mean: it can be a constant worry. I guess my goal is to worry less without being in total denial! :) great to hear from you
You're a brave man Spencer. Thanks for sharing and inspiring.
Brave! Wow, that's super nice of you to say. Thanks, man
I had a tumor removed from my head when I was a child and have had a lot of hearing loss from it. 6 plus surgeries from that, plus other medical problems about 15 total surgeries now. Lost the use of my left hand from one of those surgeries & have bad nerve pain as a result. I also survived a fullbown DVT into a Pulmonary Embolism(blood clot travelling into the lungs) which kills 2 out 3 people. I am the one survivor. I survived because I, rain or snow, *bike every single day. I also quit smoking back in 1996.* I always thought I was dealing with my medical load well until I had a breakdown 2 years ago.
I don't even know how to explain it other than this: I would have never dreamed my anxiety level was building and building, often silent inside, until I had some serious troubles. I knew my life was not "normal" but what is that? I know my anxiety is very different from yours but I definitely understand what you mean by you saying its an illness of the mind. That part is huge. I am still sometimes dumbfounded by how it effectively cut me off at the knees without actually being anything particularly tangible to treat.
This post of mine could go on for a long time so I hope this succinctly gets my point across: There's no shame in getting help for a mental condition. Better safe than sorry.
Wow, super good to hear from you. Reading what you've written, I can't help but think "Wow, the human spirit can be completely unbeatable!" No doubt about it: you've been through some stuff! And I feel like our stories connect in tons of ways.
Melissa and I walk daily, rain-or-shine, and it sounds a lot like your biking. Just keep moving, I always say, and it seems to work in all sorts of great ways.
Great to hear from you. You've given me some stuff to think about. Hang in and keep it up!
I have MS for 18yr . For the last few months I am done with meds. What I have notice that stress did effect me. I love this vid I wish you continued health.
Thank you and hang in there!
found your channel from tree stuff - got an MS194T a while ago - had no idea of your condition. I will pray for your health and peace. May the Lord bless you and keep you, and make His face shine upon you.
Thanks for your support! I'm very fortunate to be able to work outside and do what I do, despite the limitations of the disease. Much appreciated
You are so right. Life is a psychological struggle.
Absolutely. Always something to work on
Massive respect! Knowing your condition, you're doing extremely well.
As long as you maintain the good attitude to the situation, it'll be better.
Thank you for sharing your story. It might be very helpful for other people with ms.
Thanks, man. Attitude it what it's all about! Take care
Wow , you blow me away.!!!! I started watching your other Videos on your Prison Bus Build and now I feel " Oh my god I never knew you had
MS. and what you build is just great. Hope you can still be strong , you are amazing. !!!!!
Thanks for the encouragement! Nice of you to cruise around the channel
I’m glad you’re doing great. And no new flareups. My sister thinks she has MS! The doctors have talk to her about it. She’s gone through so many problems in her lifetime. I’m just glad I came across you and you’re doing great. God bless
All the best to your sister! She should keep her vitamin D up either way and know that many with MS are doing well. Take care
And I should mention that I have a channel with more MS related videos here: ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber
My mother's nearly thirty-year struggle with Parkinson's has drawn me toward all kinds neurological diseases, and in understanding how they effect the lives of those who confront them (patients, and their families/friends). Not to make light of anyone's struggle (because it certainly can be), I think in some ways, I'm attempting to understand my late mother's condition. I appreciate your candid nature. Thank you.
P.S. FORTY-SEVEN?! Whatever you're doing in that department, keep doing it! Clearly, it's working. 💪👌
As most folks seem to come to these videos because they have MS themselves, it's interesting to hear your route in. Sorry to hear about your mother -- sounds like a rough journey. Take care. :)
I've been following your videos for the last 2 years, and I feel a connection with you and your outlook on MS. It's very similar to mine. Right now, we're in the process of getting me diagnosed. However, my symptoms are so strong that the Drs believe that it's MS. I've had symptoms since my teens. I'm 47. The last two years have been seizures, vertigo, extreme heat sensitivity, tics, drunk walk, eye pain and high sensitivity to noises. It's been a struggle, but I've stayed positive. I'm also going the natural route. Diet change, herbs, Vit D, B, etc. Thanks for your positive outlook.
Dang those are some symptoms! Be strong, rest, and stay positive! We’ve got this. I’m wishing you the best of luck
Dude been following you a while now. I've had MS for 21 years. Never knew you had it as well. I feel ya. Ever wanna talk let me know I'm always around.
What a coincidence! About 19 years for me and doing pretty well. Yes, let’s stay in touch
No reason to worry at all. keep on not worrying. It definitely does more harm than good. If you ever want to go camping or hiking/Fishing let me know. You have the right mindset for activities for this kind of situation. It is all mental, no doubt about that.
We’re big into backpacking... nothing beats it. Thanks
Thanks for sharing your personal story! Started tuning in a short time ago, after getting my own bus, and have garnered a lot of great info. Much respect! Keep marching on
Another bus owner! Awesome. Thanks for the encouraging words
I am on my journey, too. Thank you for your videos and your voice. I can relate to all you say. I am also choosing to not take the drugs. God bless you. Thank you.
Hang in there man! I know it really freaked me out at first ... but after many years I've found ways to live VERY well with the disease.
It is great that you can be so open and sharing about your condition. I'm not sure I can. Glenn Lever
Thanks, man. It’s taken some practice but the benefit for me has been connecting with others. Good to hear from ya
Share. Your not alone.
I appreciate these updates of your MS journey. They are comforting to me just hearing someone else going through some of the same experiences That I am.
I haven't been diagnosed yet, which is frustrating because I've had this for many years..thanks for the videos, they help.
Thanks for the feedback -- it's nice to hear the videos make some difference. As you probably know, I went many years before being diagnosed. Looking back I guess I wish I would have adopted the anti-inflammatory diet earlier ... but other than that no regrets. Hang in there ... it's almost time for me to post another yearly update! :)
@@SpencersMSStory
I look forward to your next post! Changing up my diet has been helpful to me as well.
Thank you for this awesome video. I was diagnosed 20 years ago. I’ve adopted much of the same philosophy as you have. No disease modifying drugs either. I believe everyone is different with MS. We are all on our own journey. Like you, I eat a healthy diet, take supplements and exercise, most everyday. I also understand that the MS drugs help many people.
Great hearing from you. It's good to know there are others doing the same or similar things ... hang in and be well! :)
Thanks for sharing your story. 💜
Nice of you to say :)
I have no yet been diagnosed , but suspect this is what I have been suffering with for the past 10 years. Thank you for your videos.
Well, I'm sorry to hear you're struggling but hope you get some answers soon. Note that even if you don't end up having MS, getting your vitamin D levels up (if they're low) can be helpful and preventative. Hang in!
I have the same fear of waking up one day and not being able to walk. I totally understand. MS really messes with your mind. Thanks for documenting your MS story!
Yeah, the fear can really be badly corrosive... best to keep it at bay. Hang in there
@metaspencer I was just diagnosed with MS 5 months ago and so far my experience is very close to yours(2 years ago). I've had it for 10 years apparently with out knowing. One doctor wanted me to quit my occupation because he said I have aggressive MS and I needed to get on a serious treatment. However other doctors said it wasn't a big deal. Not knowing who to believe I decided to try altering my diet but I'm not sure that helped entirely either. Seems like the only thing that truly helps is to get at least 6 hours of sleep a night, eat what I want and to avoid "stress". I put "stress" in quotes because turns out that's a relative statement. Certain things that stress people out don't bother me and vice versa. I did not quit my profession. I left for a world tour with my band ANDREW W.K. 2 months ago and when all is said and done will publish my findings. Your video was inspiring and motivating. I agree MS may be a mind thing. Thanks for telling your story!
Very cool to hear a bit about your story! I know what you mean about stress being relative and different for everyone ... I also go for lots of sleep and mellow living. The inflammatory diet can't hurt. Hang in there! I also had doctors say my future was very bad, but so far I've only improved
Hey, great video. I share your opinion of DMD’s and I also get a lot of hassle from people saying I should be taking them. Most of them lower your immune system which worries me. I also totally get your fear and anxiety, my last attack crept up slowly in summer of last year. It has nearly almost completely wiped out my walking. I’m now seriously looking at purchasing a mobility scooter to maintain my independence. This is having a massive impact on my psychologically and It’s taking a long time coming to terms with it. Take care.
I’m sorry to hear of your recent struggles, Neil. I’ve long appreciated your videos. Hang in there and stay positive!
I too have appreciated Neil's vids and yours Spence. I hope you don't allow M.S. to become a Prison Bus, transporting you to a cell that you don't want to go. Per the mind, I've noticed that M.S. is not a condition (for most) where one wakes one day and find that he, or she can't do this, or that, but it is a gradual erosion. I offer, no advice, because you seems to be a thoughtful man. I can tell you; however, that M.S., although not seen on imaging, is still active at the axonal level. Nothing to be afraid about, just something to consider. Here's a thought with regard to gradual erosion, although a bit anthropomorphic. At what point did the Grand Canyon become Grand?
Best wishes
Thoughtful and interesting to read. Regarding the visible scans: yes, they are a crude measure of a disease that works at the cellular level, minutely and imperceptibly ... until you feel or are hit by the damage. For me, the two decades I've had it haven't made a grand canyon ... but it's clearly wearing away at my nervous system. So I try to live in the moment and appreciate what I have. Great hearing from you! :)
Thanks for your reply. I was diagnosed in 2000 at the age of 35. You seem to be doing really well and I can tell you've got an organized mind and a plan. I'm sure you've heard that M.S. is a "snowflake" condition, because we all have different issues. Social media has helped me feel less alone. M.S. works on my mind too, but I'm a little camera shy. I benefit from you and Neil who are open. I try to make a few comments now and again.
Keep up the good work. Keep calm and carry on. That's all we can do. Cheers.
John,
Seattle, WA.
Right. Near blindness and double vision - WHY did it take the doctors so long to diagnose you? That's crazy!
Years … just poorly trained doctors I guess
Thank You for Sharing Your Story and Honest feelings and fears. I freak out too. Not on any DMT. I've tried 7 and all failed me, made me worse.. Diagnosed 1/22/2015 at age 49. 14 yrs to get diagnosed from onset of 3rd nerve cranial palsy January 2, 2002.
Wow, we have some things in common! I haven't taken any meds and prefer the anti-inflammatory diet ... I hope your MS has mellowed. The dang disease can sure be unpredictable. Hang in
Dude! Thank you so much for sharing your videos. The diet and being active makes total sense. Much respect and thoughts go out to you. Hugs
hey, thank YOU for the support and comment! take care
metaspencer I came across your video when searching information on optical neuritis which I was diagnosed with 3 days ago I've had issues for about a week and I've had issues throughout my whole life I will have an MRI on Monday to distinguish out if I have MS or not hopefully I don't but most likely from what I've researched I might have it. Either way I have been dealing with it off and on my whole. Nothing new here. I hope you have a good weekend and keep posting videos!
Hey man ... I was just checking out your climbing videos and oil change vid ... I have a Crosstrek and ended up putting on one of these dealios so as not to have to replace those crush rings (amzn.to/2G2hWbc) ... but that's an aside! I'm sorry to hear about your optic neuritis. I've had it several times now, and it's always presented in slightly different ways: once just pain without visual loss, the other times with less pain but more vision less/degradation. In my cases, the vision has returned afterwards, and I hope the same for you! Rest helps, of course, and getting any possible swelling/inflammation down is pretty key. I know what you mean about having symptoms for a long time: I also was living with stuff for almost two decades before a diagnosis. Well, I'm wishing you the best and hoping its not MS but just some idiopathic fluke. But either way, you'll be good. You're obviously a strong dude! :)
metaspencer thanks for the input on the oil release valve that's so neat I am going to order it and have it on hand Incase I strip mine again haha. How long did the optic issues last? What did you eat or do to alevate it? I notice by working out it tends to go away or deep breathing helps.
haha, look at us talking about oil changes when your dang eyes are messing with you! Each time I've had optic neuritis it's lasted a couple of months, sort of fading in over a week or two and then hanging around and only gradually getting better toward the end of the couple of months. Now, I haven't had any noticeable MS exacerbations for the past 2+ years, and that's the time that I've been aware that I have MS and clued into the various anti-inflammatory diets and whatnot. So when I had the various bouts of optic neuritis, I just rested up. Others do steroid infusions. My perspective on alleviating symptoms is that you can't always control them. With that said, if it's actually MS that's messing with your eyes, you may want to make sure your vitamin D levels are up there (low D can lead to exacerbations; that's agreed upon in the literature). What's less agreed upon are things like: reducing stress of all kinds (psychological, physical, etc.), not eating things that might inflame your system (gluten, refined sugars, alcohol, etc.), and then even avoiding heat and the cold. So for me, I'd say that if you have MS there are many things you can try to do at this time, with this problem ... but I would be cautious of blaming yourself or thinking that everything is in your control. Anyway, I obviously have a lot to say ... :) The main thing: hang in there! If you wan to chat by phone or email or whatever, just ping me
I am recently diagnosed by Ms. It's inspiring to hear from you. I am 26 and I hope you keep posting these videos .
Hang in there and be strong! You have a lot of living to do :)
metaspencer thank you so much.
I admire your attitude. I’ve been having many major symptoms myself and I’m waiting on a diagnosis. If I am diagnosed with MS, I’m also hoping to not take meds if possible. I’d prefer a natural approach. Stay strong!
Hang in there! There are many, many of us doing well with the disease ... in advance it might help to keep you vit D levels up and switch to an anti-inflammatory diet. Be well !
What was your diagnosis?
Thanks for sharing your story! I've been recently diagnosed with MS and searching for people's expirience with this desease and variations of symptoms. Hope that we'll fight it well and will live a full and healthy life!
Hang in! When first diagnosed there is just sooooo much info to take in. It's important to stay optimistic, I think, as the disease has been managed by many of us. I've got some more MS videos over here ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html take care
Getting off their drugs was the best thing I ever did. Eat healthy, rest when your body tells you to and exercise.
Absolutely and great to hear. It's all about food, rest, and low stress for me. Hang in!
Spencer, I remember watching your first MS story and everything that you went through diagnosis wise and symptom wise I am going through now for two years. I have had four clear MRI’s and have seen four different neurologists and all have said my condition isn’t MS based on my MRI’s. I have these attacks where I feel like someone is squeezing me tightly around my rib cage as well as numbness and tingling in my arms, legs, and feet. I think the worst symptoms I have are terribly painful leg spasms and the hypersensitivity to hot and cold temperatures. I get this electrical sensation in my neck that travels down my spine as well. I have had a total of 184 different blood tests done in the past two years as well as eight hospital admissions. Anyways so sorry for the long story but you have inspired me so much and I admire your approach to MS as well as your positive attitude. To go as long as you did with your symptoms after two decades just proves how tricky MS can be. My GP is thinking I may be headed down that road as well. Thank you so much for sharing your story and for the updates. I’m going to start taking a vitamin D supplement to see if that helps me. Again thanks so much and take care of yourself!
sorry if u don't mind are u still undiagnosed?
I’m wondering the same thing
Love your positive attitude. My Ms sounds similar to yours. I freaked out. I'm just learning to be positive. Thanks for sharing your story. 😊
You’ve got this! A few life changes for me and all is good. Be well
My Neurologist is set that I have to take a drug regime. Over the 20 years I have had symptoms I have tried so many that only had horrible side effects. Thank You for your thoughts and experiences. ❤❤
Many neurologists get paid by pharmaceutical companies. I'm not surprised this is the recommendation from the doctor as we've all heard the same thing. Fortunately there are other options for you that have worked well for so many of us
I'm a firm believer that EVERYTHING has a cause. Once we all can figure out what is the cause of our diseases we can heal. Diet, injury, toxins, stress, etc. There has to be a reason. We don't just wake up one day with ALS, MS, etc. If only we can find out what triggered it.
I can see that point of view ... yet not everything can be reversed
metaspencer I like to think that we don't have to suffer. I think our bodies are capable of healing themselves. Just think about any other time you've been wounded or sick. Your body recovered. It may be a very complex and in depth process but I believe it can be done. Many people have used fasting to overcome illness and disease. If you haven't given water fasting a try I'd say please look into it.
metaspencer by the way you are an inspiration. Thank you for what you do. I haven't been diagnosed with ms but I have a lot of the symptoms so I'm getting myself prepared before hand. I do believe that The Most High will heal me.
Nice of you to say. Hang in there and stay positive!
Oh yeah, I totally agree: attitude, mindset, and desire matter so much. People defeat themselves in their mind first, most often. With that said, I know that we're also not in control of everything in our bodies and experience.
Thank you for posting. My dad was just diagnosed and I know he’s in shock
The shock is real, but he should know that a lot of us are doing very very well with the disease! hang in there
Thank you !!!!!!! (deeply!)
You’re most welcome
I really like your videos, you have a great personality. Just found your videos about a week ago and subbed your channel. I have been binge watching them though I still have many to go. I have a autoimmune disease and it's a struggle everyday, but I don't let it slow me down. Your going to be ok! Keep the videos coming. You make me laugh......"what's up with ground crew? Probably on the bus smoking crack" best wishes!!!
The best thing I read right there in your comment is that you don't let it slow you down! Most excellent! Great to hear from ya and thanks for the boost of support :)
Have really enjoyed your videos. I have a bus build and watched all your videos..
Thanks for leaving this note! The support is great and keeps me rollin' along. Take care!
Привет Спенсер. Hi🙋😃В России появилась возможность смотреть видео на English английском, поэтому я нашла тебя . Я тоже живу без ПИТРС 21 год с ms.(В России это РС). Ты все делаешь правильно, как и я. Нет тревожности - нет осложнений!!! 🙋👍👌😃😃😃Удачи в Пути!!!
Хороших отзывов и берегите себя! надеюсь у тебя все хорошо
@@metaspencer И ты, Спенсер, береги себя! Буду смотреть твой канал!!! 🤝🤗Иногда писать отзыв. Можно?
@@uzer-95 превосходно
Thanks Spencer.
😀
Your vidios are so cool, I watched all 30 bus episodes in one sitting..
Oh wow! That’s a great compliment
God bless you.
I really enjoy those videos. I look forward seeing your updates. Will you do an update for the year 2019?
I'll be posting the next update in March of 2020, as I did one last March ... and things are still going well (knock on wood) even though I've had some big changes in my life. Thanks for the encouragement!
Tiffany Serina he is awesome 👏 I’m 44 with Muscular Dystrophy n I know it’s hard I’ve lived with it for years I can no longer walk life has been very challenging but I try to stay positive n stay out of a 4 year depression I was in, videos like these inspired me to be ok with my body and all the changes n pain I’m in I was embarrassed my whole life, but no more! I recently opened a channel in hopes my story helps others like so many others helped me, I still have days I cry every night but I just hold on to my faith🙏🏼I pray for everyone hurting n asked to plz come visit n get to know me on my UA-cam channel @yanet Cortez hope to see you guys there I tell my story but also alittle of my life in hopes it keeps me positive n looking forward to another day I’ve come a long way from being shy to putting myself out there I pray for health kindness n support 🙏🏼 plz leave me a comment so I can thank you😘n thank u to the gentleman in this video hope your doing well hope to hear from u soon.
metaspencer hi I’m 44 with FSHD diagnosed at 9 I’ve tried staying very positive through this but it wasn’t until I saw your video that made me realize I could do the same n try to help others with not only my story but by showing that life is hard n very challenging not only physically but emotionally as well but that through it all I will make the best memories n do n see whatever I can now! N I want to bring everyone with me 😂 if not we’ll then at least I’ll have something to leave my kids n grandson lol hope to hear from u or see you on my channel😘
Hey Spencer, found your story, thanks so much for sharing! I was just released from the hospital and diagnosed with RRMS 03/10/2020. I was amazed to hear your story and how closely our stories match! I have a lot of up and coming decisions to make in regards to treatment etc, but favor the route you have taken. Your last update was 2018 on your story and was wondering if you're still on your same path without medication? I see your other videos and it looks like your doing great! Love the attitude you have! Would love it if you could do another update on your story f you have the time or willing to share. Thank you again for taking the time to share your story, and for the time you take to share or your project videos etc.
Hey Blake -- It just so happens that I dropped my new annual video just last week ... this link should get you there: @ Man, I'm guessing everything is all very fresh for you, with that recent diagnosis, and there is a LOT of information to take in. I'm completely convinced that FOR ME, not necessarily everyone, this anti-inflammatory diet + low stress + rest + vit D = the way to go, as I'm 4 years into a great relapse doing that stuff. Anyway, good to hear from you, hang in, and feel free to message me over email or instagram or facebook or whatever. it's always nice to connect with folks with similar stories because we're not alone, man! be well
Thanks so much for taking the time to reply! I must be doing something wrong. I see your play list and it shows that it was updated 7 days ago but there are only 5 videos 3 stories and 2 about cooling vests and the last MS story filmed that I can see on the playlist shows from March 12 2018. I personally don't have any social media accounts so I rely a lot on youtube. I absolutely agree with the power of diet and just downloaded Dr. Terry Wahls book to read. Thanks so much again for putting yourself out there and sharing! I absolutely love all the positivity!!!
@@blake1739 my stuff on UA-cam is kinda confusing because I have a couple of channels ... but most of my stuff is here: ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber
if you search youtube for "spencers ms story" you'll find my MS channel ... most of my stuff is on my "metaspencer" channel, hence the confusion. anyway
Hi you are a super talented person so glad your doing well
Thanks, man! :)
You are one strong guy, really.
Thanks! I try
I have that same approach to worries about the future. I try my best not to worry now because that makes no logical sense, I could die tomorrow in a car crash or something. We only have the present moment, and it's unreasonable to worry about the past or the future. If I get a huge relapse, that's when I'm going to be worried, but not now.
Well said. That's a good way to view things, it seems
WOW, I would have thought you were about 38 or 39, I'm sorry your sick!
haha ... perhaps the camera lies! :) I'm actually doing pretty well these days ... thanks!
That's great to hear hope you continue!
Thank you for the video. How are you doing right now? I have a question. Im 24 year old male and i have symptoms for 10 months now. First i was worrying about my colledge exams and then my BP jumped to 160/110 and i ended up in ER. I was worried sick about my heart and BP for months and THEN, i starting having all kinda of symptoms that look like MS to me. The symptoms are (it’s long):
Head:
Tingling
Numbness - (out of the blue for a few seconds, off and on)
Tension headaches or maybe migraines - ( that last for 5 days)
Face muscles twitching
Face tingling
Eyes:
Dry eyes - (sometimes it gets really bad)
Eye pain - (pain behind the eye that randomly comes and goes, it lasts for days to a few weeks. Been to eye doctor, she didn’t see any neurological problem there. Just dry eyes)
Eyes burning
Feeling like there’s a mint in my eye - (cold feeling)
Eye floaters
Sensitive to light
Eyelids twitching
Blurry vision
Neck:
Lump in the throat (comes and goes)
Arteries strongly pulsating ( is that normal? )
Arms:
Tingling
Numbness
Pins and needles
Burning sensations
Muscle thightness
Muscles twitching
Occasional tremors
Legs:
Tingling
Numbness
Pins and needles
Twitching
Occasional tremors
Weak legs (sometimes i feel my knees are going to give up on me)
Calf thightnes
Tense calfes
Calf pain
Knee pain when sitting for a long time
Knee “clicking” when walking down the stairs
Foot vibrations - (like i put my foot on something that is vibrating under me)
Foot pain
Back:
Back pain in the left side
Feeling like someone poked me with the finger in the left side of the low back
Random hip pain
Left butcheak tingling
Internal tremors
Palpitations
Muscles:
Sore muscles for no reason
Random shooting muscle pain - ( super scary)
Twitching
Weakness
Bones and joints:
Random joints pain
Random deep bone pain
Digestive problems:
Constant heartburn’s
Bloating
Gases
Watery stool
Going to bathroom after every meal - (3-4 times a day)
Deep pain in my colon - ( it lasts for a few seconds and it’s terrible)
Feeling like my colon is twitching inside - ( really wierd, scary and uncomfortable) - IBS.??
Bladder issues:
Frequent urination
Pee “dribbling” after i finish urination - ( I always have a few extra drops in my pants)
After peeing feeling like there is something twitching inside (prostate or bladder it’s super scary and wierd)
Mind (after few first symptoms appeared):
Thinking too much
Worrying too much
Googling way too much
Feeling distant
Feeling exhausted for no reason at times
Confusion
Feeling tired
Forgetting stuff
Thinking about MS all the time
90% of my symptoms come and go but the one that persist is my left leg (knee, under thenknee, calf) hurts and feel weak, feels tingly and numbing. Both calfes are actualy very stiff and painful like i was running. Also as my left butcheak si tingling.
I had 2 MRIs of my head and 1 MRI of spine and it’s all clear. But people say that MRI can be clear for years and you can still have MS.
What do you think? Could this be bad anxiety (since it started with anxiety) or is it MS?
First, I've just gotta say that I'm sorry to hear you're suffering. Any amount of poor health is challenging, and you clearly have a long list of challenges. If your MRIs of the brain and spine are all clear of lesions, that's certainly a good thing and not to be discounted. Yes, it's true that imaging technology like MRI can be inaccurate and unable to detect some disease activity in MS, but that is pretty rare. If I were in your shoes I guess I would do two things: 1) pursue wellness as actively as possible (diet, rest, exercise, etc.) 2) schedule appointments with specialists in the various areas of your symptoms if possible with your insurance and health care. Good luck and hang in there!
metaspencer Thank you for the reply. I am new US citizen and i don’t know anything about health insuarance. Which one do you use? Do you have free check ups or cheaper? Like for me example, in case i go to doctor and tell him about all this, he decides to send me to another MRI, how much will i pay? I’m short on money at the moment. I don’t know what to do with this.
You have to check with your insurance plan if you have one. The US system is very complicated and unfair
you look tired and less energetic than in your previous 2 videos. Still have to watch your next 2 years video. Hope your doing well. Thanks for sharing and keep strong.
Thanks for noticing that ... yeah, I've definitely had some ups-and-downs over the years
Wish you health
thanks man!
Hi Spencer,glad to see you in good conditions!Wish you health in the future too! But what about stem cells procedure?Are you try it? I hear good words of that ,but don,t have enough info!
If I were having problems I would consider stem cell therapy, but I'm doing very well 20 years into the disease. We'll see what the future brings. T'hanks for the support
A really weird disease! Hard to diagnose and everyone has different symptoms. God bless you and yours always.
yep, tons of variation ... thanks! :)
Its hereditary if you go to MS specialist in very beginning he knows what it is right away However we need MS specialist even later on Naturopath doctors is very helpful to Kenneth
Hereditary? Haven’t seen evidence of that
@@metaspencer Hi Spencer actually my neighbor who is MS specialist Gave me some real important information A two other good frends who also doctors told me same thing It is hereditary But I also heard that even one parent has heart related problems there child can have MS because thers connection So it's not the all other things we here about it's hereditary But my regular neurologist never told me this My question Spencer why do think there withhold some important information They act like they dodnt know a big mystery or its diet to much stress Why dodnt they want us know But I found out threw close freinds neighbors and family doctors Also allergies have a connection MS also hereditary We have over active immune systems but we dodnt feel that way!! Have a wonderful day Spencer talk you again 🤗
metaspencer me either. My sister-in-law has it and as far as I know nobody else in her family has ever had it.
I belong to a few of those MS groups too. They can be benefitial. Keeps us from feeling alone in this battle. Physologically MS messes with behavior, puts fear the of what "could" happen if we do things. And it COULD happen. If you lead a stressful life, chances are, you will progress faster. So we end relationships because they are toxic. Etc. Like me, I avoid going out alone now, because of all the symptoms I get. Tottally sucks.
You make good points and I’m sorry to hear your challenges. Hang in there!
Hey spencer, Love hearing your story. hope this message finds you well! Have you given thoughts to a updated video on this?
Thanks for the encouragement! Yeah, I've been posting an update each year ...here's a link to thenext one and in the info section there are links to the next ua-cam.com/video/28CJb48KAjw/v-deo.html
@@metaspencer oh! Thank you! Maybe I was in the wrong playlist. It looked like it only went up to 19. Thank you so much!
Stay Strong!
Thanks much! Yeah, still doing quite well and just hit 50. :)
I am in a relationship with a girl who just told me about her MS condition. Frankly, I hadn’t known anything about MS before meeting her. Now I am doing all I can to educate myself and help be by her side. You guys are truly warriors; the more I read more and unlock info about MS, the more inspired I become by your resilience
@@HanyANB It's so cool that you're doing some research! She'll appreciate it for sure. It's a wild disease but many of us do very well with it.
@@metaspencer this is exactly what she told me; she has an unwavering show of resilience and determination; thank you for your videos and I wish you all the best 🙏🙏🙏
I'm a big fan .......
Hello spencer , thank you for sharing your experience , what fo you think about Hcst i heard it can help a lot of people with ms
Hi Ghizlane -- by "HCST" I'm thinking you're talking about stem cell therapy? For me I don't have any need since my anti-inflammatory diet and vitamin D have completely controlled the disease.
Can you explain more about the numbness? You said tingling and numbness. Was the numbness true numbness where you couldn’t feel anything at all? A lot of people say numbness when they really mean tingling/pins and needles.
For me numbness has been no feeling in the skin and reduced sensitivity in neuro evals. Tingling, pins and needles, cold and hot sensations have all happened too as well as hyper sensitivity. What fun! Fortunately the anti inflammatory diet saved my butt
Hey, Spencer. I was diagnosed w/ MS last year at 38 yrs old. I’m a part of a few & have been looking into more online support groups, but I haven’t come across the one in particular you said that you liked on FB. Do you mind telling me what the name of it is?
Keep up the positive & good energy, man! 🤘
Hey, good to hear from you! The one I mention in the video is now called "Kristin's Multiple Sclerosis support" on Facebook. The Kristin part was added just a week or so ago when one of the original members by that name passed away. Do you have names of other groups I might find interesting/useful? I'd like to find others for sure ... take care!
Thanks, man! I find myself going to the My MS page a decent amount. They have an app also, but I don’t find it very user-friendly. You can sign up & log in through the link on their FB page which, I believe, is much easier. You can log what type of MS, what therapies/medications you’re on, how well they are doing for you, & (most importantly) connect/give advice to those affected in the MS community.
If you do happen to sign up, you can find me on there w/ the same username I use here in UA-cam. Take it easy & fight on, man!
Oh cool, thanks for the tip. I tend to avoid the National MS Society as much as possible, but will have to give the site a chance. Take care!
I know what you mean, man. They’re not affiliated w/ the National MS Society as far as I know. Give it a look though.
Oh cool
👊 thanks
Oh you betcha. Hang in there!
Hi Spencer, I am a 59 year old male, I was offically diagnosed with RRMS last October 2017. With my first "known" symptom in 2002(optic neuritis). What exactly is the Facebook groups name? "Kristin and Tracy's Multiple Sclerosis Support Group" 23,671 members? I am assuming that might very well be the one, with 23 plus thousand members. Thank you the information, I am very interested in joining this group, Jim
Howdy! Yes, that’s the group. I recently took a break from that one and am more in MS Hope, a smaller group all about dietary approaches. Anyway: hang in there man! MS is tough but you’re tougher
I’m looking forward to your next video. How do you feel now?
Oh excellent, thanks for the encouragement! I continue to thrive and do pretty well ... I'll likely post the next one in March, so it's a few months off. Still trying to stay in the present. Thanks!
Awesome :)
hello spencer,
when is your most up to date ms video, have i missed it?
i seriously think (from doing a whole lot of research) i have ms and i will be seeing a neurologist some time soon (hopefully within a week)
Hello! You'll find my most up-to-date videos and annual updates over on my channel dedicated to MS stuff. Good luck with your doctor's visit! ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.htmlvideos?view_as=subscriber
@@metaspencer
thank you, really appreciate it!
:-)
i just subscribed to the channel!
I have a neurology appoint 6/27 and we are thinking that I have MS. I have had just about every test imaginable and of all the symptoms that I see I am going through all of them. Do you have any advice?
Hey Patrick -- If it is MS every case is a bit different. With that said my advice would be to 1) pay close attention to the background of this neurologist. If it's someone who specialized in MS that would be more reassuring than a neurologist who focuses on sleep disorders or strokes. 2) note that you have a lot of decision making power. what you do with the info you get is up to you. If you do have MS I guarantee you that the neurologist will try to put you on powerful medication/drugs. that is your choice. 3) if it is MS I'd spend some time reading about the importance of vitamin D and an anti-inflammatory diet. For me and many others D and diet have put the disease into complete remission. Hang in and say calm! This is surely a stressful time.
Pls pray father god will help you in all your fear and healing pls contact me im having all crazy symtoms
my son is 16 and was just diagnosed with MS. He just woke up one morning and went to get out of bed and fell his left leg was very heavy then the next he complained about his left arm being numb so I took him to the doctor they sent him straight to the ER did a MRI and he had an old lesion on the left side of his brain and an active lesion on the right. they sent him in an ambulance to Norton's Children Hospital in Louisville and they diagnosed him with MS. He was transferred to rehabilitation institute and we are going home tomorrow. He has gained all of his mobility Back with therapy. I know they are going to try to put him on some kind of medicine so I'm torn as to what needs to be done it's my decision since he is a minor. i just don't want to make things worse for him with drugs that not gonna cure it. so that's how I found this video.
Hi Lisa! My heart goes out to you, as that's quite a powerful story and hard situation. I know that if my son was having trouble (he's 21), I'd be struggling in similar ways. The positive things I can tell you is that many of us are living long and very healthy lives with this disease. The other tips I guess I'd suggest you look into are relating to the power and importance of him maintaining high vitamin D levels (everyone agrees on this) and considering an anti-inflammatory diet (not everyone agrees on this). Check out Matt Embry's stuff online if you're interested, as he has a story that might be a bit similar to your son's in terms of gender and age. Anyway: hang in there and take things slow! He's got a lot of good living ahead of him!
Do u meditate 🙂. It helps to calm the mind.
Oh yes, it's essential to keeping me on track
👍👍 🙏
I’ve not been diagnosed with anything. I had symptoms 2 years ago but had a clear MRI... I still have symptoms, but follow a non inflammatory diet...have elevated my Vit d...take flax oil etc... and the sensations I have are kept to a minimum... who knows, but I would wager money that at some point... I will be back in there again..
You gave a brief list of your changes 2 years ago..... if I was a betting man...I would say the Vit d is probably the active ingredient in you regimen. What dose are you taking?
I’ve read a lot about Vit d supplementation and the Coimbra protocol seems like an approach that all should follow.
Hey, good to hear from you. Yes, vitamin D is pretty crucial to me: just about everyone who studies MS agrees that low levels can lead to exacerbations and problems. When I was first diagnosed my D levels were way below normal. I've been taking 5k units daily every since, and I don't get much sun ... so that keeps my levels much higher. You don't want to overdose on D, so I get my levels checked annually. The anti-inflammatory diet I'm on might be helping, might not ... but I don't think it hurts. It's interesting to hear your story. Hang in there!
I've had MS for 8 years, diagnosed 1 year ago. I'm getting a lot of help from an old Thai buddhist bodyworker. I complained to her about my risque of being in a wheelchair a few years from now. She was like: "Anyone could be in a wheelchair a few years from now. I could get run over by a bus this afternoon. It's useless to worry about it now. Everyone gets sick too." I suppose she's right. Right?
I really like that perspective. Fearing the future is something a lot of people do; having MS just makes those fears a bit more specific. Living in the moment is an art I'm certainly working on. Hang in there, by the way!
How are you now? I have been diagnosed with Multiple Sclerosis lst month only...after an attack with my right limbs... its remission time now...going good.
What to expect within 5 years?
I'm doing really well: no exacerbations for nearly five years now. I have several follow up videos on my MS channel at ua-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.htmlvideos?view_as=subscriber ... I wish you the best! Personally, I plan to stay healthy for another 20 years
@@metaspencer that's great to hear.. cheers for you !🍇
With my short experience, I think positivity has a good role to play in MS. Thank you sir. You made me calm!
Watching your video I would have never guessed you had anything a former girlfriend has it and another friend has it but it hasn't stopped them
I thought it be cool just to hang out you and work on the prison bus
Great to hear from you! Yeah, hanging out and working on the old bus is where it's at. Take care
Hi. They are trying to determine if I have ms. I'm scared. I dont know how to msg you privately. Please help
You can email me at metaspencer at gmail.com or message me on instagram or Facebook (metaspencer again). Hang in there! I know it's scary but keep in mind that many of us with MS live very great lives! Be well
I have it. No one understands me. Especially doctor.
Hang in there! The docs are often single minded ... keep that stress down and eat well.
@@metaspencer Thanks, I was diagnosed in February, after not knowing what was wrong for 10 years. When you can't work everyone just assumes you're lazy. Thing is, I worked harder than everyone untill I couldn't anymore. I did landscaping. I'm 48 and never had internet. Only got it to study M.S.. Can't believe you replied to my comment. No one has ever replied to me, up until now. Thank you! The Corona Virus scares me so bad, I don't want to go to Dr. appointments, psychiatrist, etc.. Just trying natural remedies, but the mental stress is brutal. Anyway, your words of encouragement were a very welcome change. Thanks again.
What you're doing appears to work but you could think about HSCT.
Yeah, it's both a promising and serious procedure. I've looked into it quite a lot. With very few problems at present, it's on the back burner. Thanks for the note.
I did it. It's a life changer. I'm all most exactly like you. I'm 46, was recently diagnosed, am thin, had minimal symptoms, yada, yada, yada.... My Wife found it and all I had to do was pick a location. I thought about Northwestern, talked to them but was told they wanted to have me try some medicine first so I elected to leave the US. There are multiple places to choose from. I'm just trying to help. You can decide what you want. Let me know if there is anything else you need.
Oh, and it's not serious. Trust me. I know it sounds serious, but it's not. Yes, there's chemotherapy, but it's not really anything. Again, it's your call.
Very cool. I've read and heard many other positive stories like yours! Very good, man. Take care
Yeah, it looks like the death rate is pretty low (mainly caused by infection)
What pain meds do u take?
No meds, no pain currently. When I’ve had intense pain it’s been tough, though, that’s for sure
metaspencer I dont know how u do it when u have a flare up .
For me, a lot of my flare ups have not been painful as much as debilitating: so things like vision loss or loss of feeling. The thing I've learned about MS is that we all experience it very differently, as the nerves getting attacked can have so many different results. Hang in there! It sounds tough.
Seems pretty logical to have a monster following you around and having anxiety about it. Have you tried CBD or marijuana? Doesn't help me but seems to help a lot of people.
I haven't tried either of those, but have also heard largely positive stories. For me, so far, it's all about rest, exercise, low stress, following the anti-inflammatory diet, positive attitude, and all of that.
@@metaspencer good for you. Stay happy!
You dont have lessions? You are vegetarian? How long? You get neutropenia? How often
Four spinal lesions now, no evidence of growth on annual mri ... now on anti inflammatory diet very strictly
@@metaspencer Thanks for reply can i post this video on Barra blog?
Oh yeah... feel free to share
How are you now?:o
I'm doing really well ... very active and physically fit, no relapses for 4.5 years, and optimistic!
So your brain hasn't worsened but your vision has?
Not really. I’ve had vision related exacerbations but they’ve largely gotten better
I got MS diagnosis 2 years ago I have no problems but I'm worried about the future so I'm thinking of committing suicide because I don't want to be disabled😔😭😪😪
Hang in there! I've had the disease over 20 years and have no disability at all. Many of us are doing very well!
@@metaspencer what do you recommend me
what should i do to live a healthy life
Do you think there will be treatments that repair myelin?
@@ramazan9857 For me it's just been simple: a strict anti-inflammatory diet of whole foods and vitamin D. Low stress seems to also help. Rest, feel good, you've got this!
@@metaspencer please help me i'm too young i don't want to be disabled 😭😭
There is no mention from 99% of the MS stories about what caused their MS. You all talk about the same thing and it has gotten boring MS Stories.
That's because there is no known cause. Incidence increases farther from the equator and women get it slightly more frequently than men, but there is no known cause. Even Epstein-Barr has a correspondence but not 1:1 causation