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9 Years Since Multiple Sclerosis Diagnosis - My MS Story
Details on diagnosis, optic neuritis, nerve pain, my anti-inflammatory diet, and LIVING WELL with MS.
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Пікірлер: 74
“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
4 ай бұрын
And it's always so great for ME to see your thoughtful work here on KZread. We're making out way through this disease my friend :)
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
4 ай бұрын
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
4 ай бұрын
Это работает. Лекарства - no.Вам здоровья❤
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
3 ай бұрын
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
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
Ай бұрын
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!
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
Ай бұрын
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
Ай бұрын
@@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.
I'm always very glad you are doing so well, buddy.
@SpencersMSStory
4 ай бұрын
Thanks buddy! nice of ya to say
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
15 күн бұрын
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
6 күн бұрын
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
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
4 ай бұрын
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
Ай бұрын
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
Ай бұрын
@@DominikLaskowski when I first got diagnosed I posted this video, and it answers a lot of your questions: kzread.info/dash/bejne/rKtp0rKomrWsgrg.html ... 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
Ай бұрын
@@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
Ай бұрын
@@DominikLaskowski Sounds super challenging! hang in there!
age 53? goddamn sir you really have been taking good care of yourself
@SpencersMSStory
2 ай бұрын
gotta do it! :)
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
3 ай бұрын
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 :)
So glad you are still doing well brother.
@metaspencer
3 ай бұрын
thanks buddy!
I am coming up on six years post diagnosis. Thankful for other voices who are talking about to.
@SpencersMSStory
4 ай бұрын
Six years! That's a good long while so I'm hoping things have evened out for you. Hang in
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
4 ай бұрын
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
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
4 ай бұрын
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!
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
4 ай бұрын
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
4 ай бұрын
@@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
4 ай бұрын
@@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
Thank you so much for sharing this!
@SpencersMSStory
4 ай бұрын
We've gotta keep moving forward, ya know! :) Be well
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
3 ай бұрын
Thanks for that! much appreciated :)
Excellent video! Keep up the good work and keep spreading the message
@SpencersMSStory
4 ай бұрын
Thanks friend!
I love these vids and I love even more that you are doing so well.
@SpencersMSStory
4 ай бұрын
Thanks Curtis! Always great seeing you on here doing your thing, as well :)
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
3 ай бұрын
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
3 ай бұрын
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.
Spencer.. how did you stop freaking out after your diagnosis? I am so scared and I can’t calm down. Constant anxiety
@SpencersMSStory
3 ай бұрын
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
3 ай бұрын
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
3 ай бұрын
@@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
3 ай бұрын
Thank you so much❤️ you have inspired me today
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
Ай бұрын
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
Ай бұрын
@@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.
Hell Yeah! Love ya bro!
@SpencersMSStory
4 ай бұрын
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
4 ай бұрын
@@SpencersMSStory Been having a blast!every fortunate and thankful to be where I am at right now. Perfect riding weather too.
Great video. 😊
@SpencersMSStory
2 ай бұрын
thanks!
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
4 ай бұрын
Да, стресс может вызвать множество проблем со здоровьем. Держись, друг!
@uzer-95
4 ай бұрын
@@SpencersMSStory Благодарю.♥️♥️♥️Тебе здоровья. Онемение постепенно исчезает без сильных таблеток. Витамины и хорошее питание помогают справится. Все будет ok🙂
@SpencersMSStory
4 ай бұрын
@@uzer-95 Да, в самом деле
@uzer-95
4 ай бұрын
@@SpencersMSStory Thank you.🌺
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
4 ай бұрын
Who's the "we" you're talking about here? I don't follow you exactly
@jasonc5289
4 ай бұрын
@@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
4 ай бұрын
Oh, and the study from 2017 where "we", inexplicaby, ranked 54th, had Macedonia in 55th. Macedonia and then the United States.
You haven't aged at all.
@SpencersMSStory
2 ай бұрын
clean livin' haha :)