9 Years Since Multiple Sclerosis Diagnosis - My MS Story

[@EvenSoItIsWell]

“Made a job of de-stressing my life.” Preach!! Spencer you were one of the first “My MS Story” videos that I watched. I appreciate you taking your health into your own hands and how you live your life in general. I am so glad you are doing well!

[@SpencersMSStory]

And it's always so great for ME to see your thoughtful work here on KZbin. We're making out way through this disease my friend :)

[@s0phian0va]

Your story has been the most inspiring for me! I took Ocrevus for two years when I first got diagnosed, but after establishing lifestyle and diet changes, I am off of meds now and doing well with no new lesions or symptoms! Thank you Spencer!

[@SpencersMSStory]

It's so cool to hear about how you moved off the meds. Good job! Ocrevus is one of the meds I considered back in the day, and I've known a lot of people on it. Keep doing what you're doing as it sounds like it's working out!

[@uzer-95]

Это работает. Лекарства - no.Вам здоровья❤

[@Alpinetowing]

I was diagnosed in 2017. It's good to hear others stories and experiences.

[@metaspencer]

Hang in! Lots of good living to do

[@6ftS]

I'm always very glad you are doing so well, buddy.

[@SpencersMSStory]

Thanks buddy! nice of ya to say

[@14sgs]

For me it is therapeutic to listen to other people tell their MS story. I think I've seen all your vids. Thank You for sharing. My Initial nerve pains I thought I might have diabetes. The Story: I was diagnosed 2.5 years ago at 54 (male) and it was determined via MRI (no ST). I have a heavy burden of lesions in the brain and spinal cord. It's been a tough 2 years but now it all makes sense. They changed my initial diagnosis from RRMS to PPMS on year 2 assessment. I have numbness in hands and feet 100% of the time. Keep on trucking, I guess. I know I can do better in foods and exercise ... But will I? I do practice Intermittent fasting now though. See ya next year!

[@SpencersMSStory]

Good to hear from ya even if things are tough. I appreciate your honesty and openness about the diet stuff -- it's definitely not for everyone to do this strict anti-inflammatory thing. Be well buddy!

[@stonz42]

My spinal tap also sucked. I blacked out during my procedure from the vagal response as well. I was diagnosed 3 years ago after having symptoms for 16 years prior and been on Ocrevus for 2 years. I also modified my diet and exercise routine to combat inflammation and happy to report no new symptoms or lesions since my diagnosis. My vision has improved but I do have permanent vision loss in one eye after having neuritis in both. Right eye is considered legally blind now unfortunately. That was also the worst of my symptoms. Glad you’re well after all these years without a DMT. You give us MSers hope for the future.

[@SpencersMSStory]

And the thing that annoys me is that the spinal tap isn't even necessary to confirm MS if the doc knows your symptoms and has lesions on the scans. Oh well, the good thing is that we SURVIVED the dang process and I'm glad to hear about the diet working for ya. I also have some vision loss that's permanent (not as bad as yours) but seem to have gotten used to it. Stay healthy!!

[@stonz42]

@@SpencersMSStory In my case, and maybe yours, my symptoms were kind of generic and not typical of MS. Although, the MS doc ordered a ton of blood tests that ruled out the other things. I did have bands on the tap, but no active inflammation on my MRI or eye exam, which led to the tap. Glad I'll never be doing that again. I've also gotten used to my poor vision in the bad eye, but never had double vision. I had very bad contrast vision at diagnosis. Although, I did have a difference in color vision in that eye since I was a teenager and suspect that's when my first neuritis hit. Unfortunately, my annual eye exams didn't show anything abnormal and I could read the eye chart consistently until I couldn't and that's when my local neuro-ophthalmologist first diagnosed my MS. The tap was done at an MS center with my MS neuro after my local diagnosis. Your MS story videos were some of the first I saw after my diagnosis and that led to me exploring the anti-inflammatory diet, so thanks again for being public about your MS journey and supporting all of us newbies.

[@klarastepankova9757]

Hi Spencer, I am 29 and I have been diagnosed 1 year ago. I have two very small lesions on the brain. I had my MRI scans last week and there is no progression at all, completely the same like one year ago. I started following Matt Embry diet plan, exercising, supplementing vitamin D. Even though I am on Copaxone I guess exercising, taking vitamin D, less stress and eating anti inflammatory is the key and playing very big role on the disease. .As you said there is some symptoms because of the lesions like tingling or burning skin,but that just happened very sporadically.Thank you for your videos,because of them I know I am not the only one person with MS. Greetings from the Czech republic.

[@SpencersMSStory]

It sounds like you're doing well! Following that diet makes sense to me, and it certainly can't hurt your health. At 29 you have many wonderful years ahead of you so keep that inflammation down. Be well friend! (I haven't been to Czech Republic since 1992 ... but what a great visit that was)

[@DominikLaskowski]

What was the reason that you went to seek medical help in the first place? What symptoms did you have that got you to doctors? I just had my spinal tap done a week ago, fluid is clear brain CT also clean now waiting for my MRI to happen In 3 weeks. Thank you and sending a lot of happiness your way. Stay strong

[@SpencersMSStory]

@@DominikLaskowski when I first got diagnosed I posted this video, and it answers a lot of your questions: kzbin.info/www/bejne/sKiYoYOln7d5iLc ... basically, I was having a TON of health issues for fifteen years, and it was getting much worse. I'm assuming you're having an MRI done of the brain and spine? I only ask because some of us have lesions on the spine but not brain ... good luck with it. I hope you find some answers!

[@DominikLaskowski]

@@SpencersMSStory thanks for sharing Spencer. I have watched the video you mentioned now. Very informative. Yes I am awaiting an MRI scan of my brain and my cervical cord. I have been in a lot of pain recently including a week of laying and not moving much after the spinal tap. My spine condition is pretty rough. The CSF from the spinal tap came back clear and the doc says we do the MRI to rule out demyelination which is good. 3 months ago I came back from holiday in Africa, 2 weeks after I have been having some liver pains and been diagnosed with fatty liver. It all went downhill from that point. They put me on omeprazole which is an acid reflux remedy. After 2 weeks of taking that some weird stuff started to happen. I was having pain in my legs like my legs were about to explode especially near the Achilles muscle. I was getting chest palpitations and was super dizzy when standing up. Then it all went away but the leg pain persisted, after a month tingling in my wrist have joined and now since last week i have some weird neck stiffness when I look down which is crazy unpleasant. The doctor said it might be due to my spine being not so straigh and there might be some pressure to the nerve. I am wondering if a pressure on the nerve could cause this weird problems such as muscle twitching that I have. My mental health is non existent I am only watching MS videos for past two weeks and they are only glthing that makes me happier I guess. Thank you for your decision on starting this channel. Even I won't be diagnosed with it I will be an active member of this group. There is so much passion and support in people with MS it is unreal.

[@SpencersMSStory]

@@DominikLaskowski Sounds super challenging! hang in there!

[@forevershann9129]

I’m shan and im 30 i just found out that i have MS !!! And i dont know how i feel i had all the symptoms for 1 year and i didnt know what was going on with my body but today may 8 /24 it’s confirmed i have it and im lost i am glad i found you page because you motivate me to change my life completely in a positive way !! Keep dropping these videos !!!

[@SpencersMSStory]

Hey Shan! That's some tough news to take in and digest ... but I think that over time it can become a whole lot less shocking and overwhelming. Stay positive! There are many of us who have had MS for decades and are doing GREAT without drugs. If you haven't looked into anti-inflammatory diets for MS you might find it interesting. Hang in there! You've got this :)

[@ИринаЛатышева-ц8в]

Hello! Been just diagnosed with MS. I am 25 years old. It sucks having such a disease. Nonetheless, I want to say thank you for sharing your experiences throughout these years. I myself noticed if I eat a lot of carbs, sugars, dairy, gluten, I get sick. I feel like I burn inside. Also I noticed if I stress over something, things again get worse. I have not been on any drugs yet, still waiting to get them, but I will be surely following your approach: diet, no stress, lots of rest, vitamin d and other supplements. Hope it will reduce my symptoms. Thank you!

[@SpencersMSStory]

You've got a lot to think about and deal with for sure! Being diagnosed can be a challenge and a blessing. I say blessing because now you know the road forward. I first had symptoms at 27 ... hang in there and I'd recommend the anti-inflammatory diet. It's done wonders for many of us along with vitamin D

[@kevinward7498]

Have you ever tried detoxing heavy metals? I eat a diet that's very similar to yours because I have to avoid heavy metals and glyphosate contamination in food which gives me a lot of different symptoms, some of which are very similar to MS. ​@@SpencersMSStory

[@michelletodd4893]

Had 17 years. Optic neuritis finally damaged optic neve to atrophy and thinning and blindness. Friggin cognitive. Forgeting words, its in my head but never makes to mouth. I can tell you in detail the birth of both my daughters, but I keep forgetting the name of the salon we've used for 10 years. Legs are getting weak. Sleeping too much. And i'm not depressed. I've had doctors ask what medicine are you on. I ask which ones work. I have microvascular disease, so already had that first heart attack and brain shrinkage from that and MS. Keep it up. Anti inflammatory diet is diet I've always bern on. Do suppliments. B12, D3. Tumeric, ginger & and black pepper. Spinal tap was okay.

[@SpencersMSStory]

Sounds like you've had some challenges! I'm sorry to hear about the struggle and hope it stabilizes soon

[@Billster1955]

So glad you are still doing well brother.

[@metaspencer]

thanks buddy!

[@tedgendron2372]

Hey Spencer, I look forward to your annual instalment, thank you for doing this. I was diagnosed almost 20 years ago now, and while I have had a few more issues the last couple of years, I feel pretty fortunate. I view MS as a blessing. While I would rather not have it, I am reminded each day to enjoy the things I am able to do (which is virtually everything). Keep making your videos my friend, it is always a highlight for me to see how well you are doing.

[@SpencersMSStory]

I appreciate your perspective soooo much about MS being a blessing. It took me a long long time to realize that in many ways I'm better off with the disease. What a strange concept! Keep on moving forward my friend, and thanks for the note

[@pavlinajirankova7382]

Hi Spencer, I'm really happy you are doing well! I'm not diagnosed but have had many ms symptoms for years (tingling, heavy feet, dizziness, blurred peripheral vision at points just some of them), on and off. I was relieved last year after MRI of brain and spine that I'm apparently 'ok' and don't have ms but i know something is definitely creeping at me. I'm also eating anti inflammatory diet, I'm active etc so I'm hoping that i can somehow reverse the damage in my body, perhaps even before a diagnosis! I know about how important a gut health is and so I'm focusing on fixing my long term gut issues. It's not an easy fix but i hope I'll get there soon. I am feeling encouraged by your videos. Thank you so much for that!

[@SpencersMSStory]

It sounds like you've found lots of information out there, which is half the battle! or maybe more than half :) Yet lacking a solid diagnosis can be so frustrating (as I know all too well). Hang in and stay as healthy as possible despite the failings on the medical professional side of things :)

[@pavlinajirankova7382]

​@@SpencersMSStorythank you for your reply. Unfortunately (or fortunately?) i stopped waiting for medical system to help me. I've waited for my first neuro appointment for 6 months, this was classified as urgent appointment. Now as they said I'm basically "well" as nothing was found so far on my brain, all the GPs in my clinic are treating me like hypochondriac whenever i come with a new problem; and my next neuro appointment is next year, meaning it will be two years from the first appointment (apparently a normal waiting times in the UK now). It forced me doing lots of research on my own and make a treatment plan by myself. I've found out about LDN which i want to try and see if that could be helpful for now. I'm just sorry for all the people with these strange symptoms which are being sent back home with no result and treated like it's all possibly in their head😢

[@SpencersMSStory]

@@pavlinajirankova7382 those impossibly long waits are so familiar to me ... and crazy! taking things into your own hands might be the best thing you can do

[@SjSalvidge]

I am coming up on six years post diagnosis. Thankful for other voices who are talking about to.

[@SpencersMSStory]

Six years! That's a good long while so I'm hoping things have evened out for you. Hang in

[@__Wanderer]

Great to hear you're doing well Spencer :) Think you're doing incredible for 9 years and no relapses! The changes you have made are making a big impact - low stress, healthy food and exercise all working their magic :) Sadly my first relapse left me blind in my left eye permanently - came out of the blue with no other symptoms prior (my biggest fear now is also getting optic neuritis in my other eye / leaving me with full blindness - not quite sure what I would do in life if that were the case). I was rather stressed at the time and had covid 3 weeks earlier so suspect a combination of the two triggered the event. Also hoping to do as well as you are! I am only 2 years into my journey...

[@SpencersMSStory]

Good hearing from ya even though that's a rough story! I've heard from others who have had doozy exacerbations like that one that knocked out your eye ... and then sometimes an exacerbation can be relatively mild. Who knows for certain what determines the severity of an attack??? One thing is for certain: we've gotta try to avoid any flare up whatsoever. Two years in means it's all fairly fresh for ya. Keep moving forward!

[@mardaripaul5382]

Your approach is a very good one. Are you still on the Swank diet? I have MS since 1997 (I was 3) and was diagnosed correctly, but then MS was discarded because "it resolved fast". During the years, they kept saying that I have herniated discs, probably sarcoidosis, depression, maybe psychiatric disorders, etc. I'm the opposite version of you. I ate fast food, had a sedentary life, and smoked maybe 3 packs a day. The MRI is something out of a nightmare. There were probably as many as 100 lesions on the brain (T1 and T2) and 15 on the spine; some of them disappeared, and some of them regressed in size on both the brain and the spine. However, EDSS is 1.5 (because of a decrease in left eye visual accuity from the last relapse). I'll switch to an antiinflammatory diet, and I'll also finish translating into Romanian the "Best Bet Diet" book, so other people impacted by this disease should know what to do. Hugs!

[@SpencersMSStory]

1997 was when it started for me, too -- but I'm much older. Hang in there my friend! Yes I'm still following a strict anti-inflammatory diet, but not the Swank diet. Swank just focused on avoiding saturated fat. Be well friend

[@谢特妈惹法克]

Were you diagnosed with MS at the age of three? How are you now? You only have DSS is 1.5. Have you never taken any drugs? You are great.

[@denisenj7648]

Thank you so much for sharing this!

[@SpencersMSStory]

We've gotta keep moving forward, ya know! :) Be well

[@anabelena509]

Once again Spencer, great to see you doing fantastic! I really enjoy your videos, hopefully you decide to make them more often in the future😄

[@SpencersMSStory]

Thanks for that! much appreciated :)

[@deljay1840]

Excellent video! Keep up the good work and keep spreading the message

[@SpencersMSStory]

Thanks friend!

[@ducdanjou7885]

I love these vids and I love even more that you are doing so well.

[@SpencersMSStory]

Thanks Curtis! Always great seeing you on here doing your thing, as well :)

[@Lorrainerandall]

I just wanted to say thank you for the videos. I have been on a similar path and came to the same conclusions. I am 63, fully functional, and have some residual damage (ankle and leg weakness) that I am working on correcting. The naysayers are everywhere. I was infected with EBV when I was 16, symptomatic since. I have my life back, but it took a lot of work. Best Bet Diet, Perlmutter and the MS genius, Terry Wahls. No DMT--but the doctors can really put on the pressure. Stable MRI over 8 years, despite covid. I might have been interested in DMT if they had first discussed a neck issue, health, diet, sauna and exercise. Our medical system is a debacle. Thanks for standing up for lifestyle and health changes--hopefully it will encourage others to take charge of their health.

[@SpencersMSStory]

wow, so much of what you say resonates with my own perspectives and experiences! oh how I know about that pressure from the docs you describe -- and yet they never start with diet, stress, or any basic "health" issues. Anyway, great to hear from a fellow traveller. Keep positive!

[@Lorrainerandall]

Thanks again for the post. One day I would like to see an action plan for people diagnosed with MS. For the rest of my life I will be fixing the damage that could have been prevented. There's a real cost to the lack of action.

[@谢特妈惹法克]

@@Lorrainerandall Are you still in good health? Is your edss below 2? Your control and efforts for so many years are really great.

[@HmemTrok]

انا سعيده جدآ بك انت ملهم جدآ لقد كنت محبطه وخائفه لم يتم تشخيصي بعد ولكني لدي افات علا الدماغ ضهرت بالرنين المغناطيسي وانا الان انتضر نتائج تحليل البزل القطني انا اعاني من صعوبه في المشي وارهاق شديد سأحاول ان اتبع نضامآ غذائي واتمنى ان اتحسن ولكن هل مسموح بالزيوت النباتية في اعداد الطعام

[@metaspencer]

لديك الكثير من الحياة الرائعة أمامك! اقرأ فقط عن الأنظمة الغذائية المضادة للالتهابات، وتجنب الأطعمة المصنعة، ولا تتناول الغلوتين أو السكر المضاف... وتأكد من أن مستويات فيتامين د لديك جيدة. سوف تكون عظيما!

[@HmemTrok]

​@@metaspencerشكرآ لك انا ممتنه جدآ لك ساعمل بنصائحك واتمنى ان تقوم بفديوهات دائمآ لانك تعطي طاقه ايجابيه وملهم جدآ

[@brandicalhoun5132]

Spencer.. how did you stop freaking out after your diagnosis? I am so scared and I can’t calm down. Constant anxiety

[@SpencersMSStory]

Don't rush yourself -- it can take TIME to come to terms with any big life change like that. The thing that helped me the most, and I'm not sure if this will be as meaningful to you, was simply realizing that it's not a life ender and that there are sooooo many people living well with this disease. For me, thinking "It's over" was the thing that made me freak out and when I recovered my optimism I calmed down. Are you don't the important things to stay chill like exercising, eating super healthily, sleeping, minimizing stress, etc? Let me know what works!

[@brandicalhoun5132]

I just started on the wahls diet.. I have been doing guided meditations, and breathing exercises. I’m so exhausted and my legs are stiff and tingling for a month now.. it’s hard to get out of bed. I cry a lot

[@SpencersMSStory]

@@brandicalhoun5132 that diet is a great step! give it time to kick in, make sure your vitamin D levels are up there, and stay positive. You've got a lot of living to do!

[@brandicalhoun5132]

Thank you so much❤️ you have inspired me today

[@TheDetoxCureGuide]

I had many of the symptoms and recovered by detoxification. I made a video about how environmental pollutants can worsen or trigger it.

[@SpencersMSStory]

I'm glad to hear your MS is in remission

[@shanasigler274]

Good stuff!!! What area do you post from? Looks a little PNW. My MRI showed lesions in 2016. It official diagnosis 2021 after a ton of stress. I’m still healing my upper body. No meds for me. Tried them under pressure then changed my mind. Thanks for sharing 😊

[@SpencersMSStory]

I lived in the PNW for many years but am now out East. Oh yeah, I know about that "pressure" you mention regarding medication. But sounds like you've found a productive way through things. Hang in! Healing up is the way to go for sure with this dang disease

[@shanasigler274]

@@SpencersMSStory cool. Yes I’ll keep hanging in there. I want to find a nice set up on some land. To enjoy projects and easy living. Focus on health, activity, and food. I’m in Phoenix currently. Tried Seattle area but the humidity was too much. Now thinking of Oregon, east of the mountains.

[@SANDS78]

Hell Yeah! Love ya bro!

[@SpencersMSStory]

Thanks buddy! Got my moto out this week and was thankful (as always) that you encouraged me to jump on that wild beast! looks like you've had some good travels recently :)

[@SANDS78]

@@SpencersMSStory Been having a blast!every fortunate and thankful to be where I am at right now. Perfect riding weather too.

[@dwdigital13]

Hello Spencer, I’m looking through your videos and trying to find the diet you follow. Is it a version of the Wahl’s diet?

[@SpencersMSStory]

Yeah kind of a combo of the "Overcoming MS" diet and the Wahls Protocol. I like all the focus on nutritionally rich foods in Wahls' book, but I'm not into the keto thing and the "paleo" belief system. So I go with whole-foods and avoiding anything on the lists of inflammatory foods

[@DeanWright-pp2vq]

@@SpencersMSStory Thank you!

[@KiaNooriComedy]

So would you advise against Ocrevus? I've read a lot of people do well with that and experience no side effects

[@SpencersMSStory]

I think everyone has gotta make their own decisions. For me, I don't see any reason to take a powerful drug like that with lots of potential side effects (more infections, PML, Colitis, etc.) given the fact that diet and Vitamin D and low stress have completely surpassed the disease for me. But maybe that's just me. Hang in buddy!

[@uzer-95]

Получила серию стрессов и когда конфликт решился, то заработала обострение( выздоровление, с точки зрения Германской Новлй Медицины). Так что всем здоровья. Просто не попадайте в СТРЕССЫ. СПЕНСЕР,спасибо за видео.❤❤❤

[@SpencersMSStory]

Да, стресс может вызвать множество проблем со здоровьем. Держись, друг!

[@uzer-95]

@@SpencersMSStory Благодарю.♥️♥️♥️Тебе здоровья. Онемение постепенно исчезает без сильных таблеток. Витамины и хорошее питание помогают справится. Все будет ok🙂

[@SpencersMSStory]

@@uzer-95 Да, в самом деле

[@uzer-95]

@@SpencersMSStory Thank you.🌺

[@hilarykerr7383]

Great video. 😊

[@SpencersMSStory]

thanks!

[@EvanAPW]

How’re you, mate? Haven’t seen you for a while.

[@SpencersMSStory]

Doin' great mate! yeah just living life and working and stuff. I post all the time over at my "metaspencer" channel

[@EvanAPW]

@ awesome! I’m very happy to hear that, I’ll check the other channel out. All the best with everything 👍.

[@annipsy2185]

age 53? goddamn sir you really have been taking good care of yourself

[@SpencersMSStory]

gotta do it! :)

[@Sam-ci8bp]

Do you take LDN? Do you know if it's helpful for MS? Thnx

[@metaspencer]

I don’t take it or any drugs but have heard some do

[@golub1marko]

I am drowning in cheese and milk and I can say that is all I eat and I have MS since 2011. or CIS had in 2011. ,first realaps in 2015...I couldn't walk or use my right hand at all and I mini relaps in 2017. with nistagmus and today I;ve got EDSS 1.5 .On vitamin D since 2015. and that's it.Since I was 16 years old when I got first contact with this ,now 28,I have erectile disfunction since first day also. I adopt to live without girls in my life for 7 years so far and it's not nice but what can I do...I can use viagra but I have some heart issue and I can but in the same time I can't.

[@metaspencer]

Why eat the dairy bro?

[@golub1marko]

@metaspencer I know that dairy is higly inflamatory food but I can do against myself because cheese is 80% of everything I eat....I don't eat any kind of meet or fish and my blood is almost perfect for years.Only AST and ALT is above normal because in the time ,I was on rebif,now I am not and even ALT and AST is normal for last 4 months,everything else is in the perfect half beyond low and high.Just cholesterol is slightly above but without rebif ,that would be perfect also.

[@SpencersMSStory]

Interesting to hear. I hope things work out for you and that MS becomes insignificant in your life

[@jasonc5289]

Now, here's what I know. "We" aren't first. "We" aren't fifth, tenth or even 25th. I read that "we" ranked 54th in 2017. Think about that. In 2021, "we" ranked 37th and 38th in 2023. Real studies. It's weird. I went to same place as Jack Osborne. Like I said, it's so weird.

[@SpencersMSStory]

Who's the "we" you're talking about here? I don't follow you exactly

[@jasonc5289]

@@SpencersMSStory "We" being the United States. It's beyond weird. "We" have the cure to many, many "diseases". In America, not so much. I suppose "we're" still testing. At least that's what the former head of FDA says, who now works for Pfizer. Like I said, it's beyond weird.

[@jasonc5289]

Oh, and the study from 2017 where "we", inexplicaby, ranked 54th, had Macedonia in 55th. Macedonia and then the United States.

[@trapped-ion]

​@@jasonc5289What are you talking about? Are these names I numbers rank values of something?

[@jasonc5289]

@@trapped-ion These are the rankings in healthcare. We are the United States. We aren't in first. If you live here, ask your doctor where the US comes in. I was shocked at first but then came to accept it. It is so weird. We can be so great. Unbelievable actually. Like I said, it is so weird.

[@Summerbreeze537]

You haven't aged at all.

[@SpencersMSStory]

clean livin' haha :)