My MS Story - 20 Years In

[@ishouldbesleeping1354]

Dog go doesn’t know why you’re talking to yourself but he wants you to know he’s there if you need support. He smells to check your chemistry and is patient and lets you work through your self talk . I love your dog 🐶 He’s on guard and has your back throughout and leans in when you have feelings

[@metaspencer]

Thanks!

[@marycollins8215]

Glad you shared! Don't feel guilty about doing well. You show compassion for those who are suffering, and you also need to live your own journey. I was diagnosed in 36 in 1995 and symptom-free for 23 years diet, destress, detox, and has worked for me. Proud of you!

[@SpencersMSStory]

23 years! That's just so great. I feel like I finally got on the right path a few years ago when I was diagnosed and started reading, but there is nothing as valuable as hearing from someone like you. Thanks and be well!

[@rrfitnesslv949]

What type off diet do you do? What detox approaches did you do?

[@donnadeford483]

And always be positive ..❤

[@littlesob63]

Hey Spencer. My story is similar to your's in so many ways... and beyond MS too. I actually found your videos looking through woodworking ideas. The 'short" version for me? Well I had symptoms in 1996, numbness mostly and it took nearly 3 years for a diagnosis after half a dozen doctors, Oy, those doctors. I had several lesions on my spinal cord and none in my brain then in '96. They didn't push the drugs so much then and for whatever reason I went 9 years before a new doctor, an MS specialist put me on copaxone. I was fine with it.. and over the next 10 years I like to believe it helped me and reduced attacks. I'm 55 now and it will be 20 years since my diagnoses next month, 23 years since first symptoms and this is what I never knew about MS until just last year... IT STOPS! In a manner of speaking at least. It slows down after 20 years or so depending on age at onset and stops being aggressive. My dr told me this and took me off of copaxone! I was thrilled of course at no longer being a human pin cushion but more so to learn that I'm not going to get worse. No major changes or new symptoms. I've always worried that in my 60s, 70s... that I would be a burden to my wife, my family and that I would need help, need a wheel chair, etc. My MS doc in an eastern European lady with a great accent and way of talking and she said, " Steve your MS career is coming to an end." Well I'm happy now to be able to say MS has had it's way with me for nearly a quarter century and now I'm making my come back. I guess I was struck by your story and the number of years you have dealt with MS and I just wanted to say that maybe like me, it will slow and stop with you as well. Good luck Spencer. I'm thinking of an MS story of my own on youtube... Thanks. SteveO

[@metaspencer]

Steve O'Brien wow, countless similarities! I identify with your story and perspective. The dang disease becomes a part of us I guess. Let’s keep chugging along! Great hearing from you man

[@lillyaswad5028]

Thank you for this comment

[@lisaho1218]

How are you feeling now?

[@cooksmary]

Yes, Selma Blair gave me permission to just go to bed when I feel awful. Been dealing with a big flare for six months, and I think I might be in remission again. I can only hope. But I found that extra sleep really made a difference in how much I was improving. Thanks Selma. Thanks, Spencer and Melissa.

[@SpencersMSStory]

6 months is tough! Rest up and you’ll get there. Wishing you the best

[@MM-ov8on]

cooksmary I didnt know relapses can last 6 months. That makes me feel better because I’m in the 3rd month of mine. My symptoms are not bad compared to most people but I’m so scared.

[@DCFunBud]

So nice to meet Melissa. You make such a lovely couple. I hope this next year is smooth sailing for both of you.

[@PacoMacSwiney]

My friend, your MS story was one of the first videos I saw after my diagnosis 2 years ago. I've seen 3 of them few days after you post them, you've been walking along with me (and others for sure) without knowing it. I bought "living proof" right after it was released because of your blog post. Thank you for your annual video! Hope you continue with no problem in your health.

[@metaspencer]

Wow, it's great to hear from you and to know that we've made a connection! Making videos like mine, it's hard to know if they will ever be found and actually reach people. I'm so glad to hear that you checked out "Living Proof" -- it's a powerful set of interviews and stories. Let's be well and hang in there! Stay strong, man

[@davidspencer6771]

Thanks for replying to my msg Spencer and we will keep hangin in all the best to you both dave

[@ceedee2432]

MS’r here! Recently diagnosed ,at 27 yrs old, in the summer of this year. The only onset of symptoms were like yours with numbness/tingling in my hands and feet and constant back pain. No vision issues for me. But i have started iv infusion and a strict diet as well. I need to be more intentional with my exercise though lol. Continue to share your story sooo inspirational!

[@SpencersMSStory]

Hang in there! You can do this. Many of us are doing very well after many years ... keep that vitamin D up and avoid inflammation. be well!

[@davidspencer6771]

Hey mate I've just been watching your work videos this last week and I've just watched your ms update you're such a positive guy keep on doing what you're doing I my wife and I know what its like to have to care for a severely disabled daughter who unfortunately we lost to covid in November your such a inspiration man were from uk God bless you and your partner dave

[@metaspencer]

First, great to hear from you and nice of you to dig into these MS videos of mine. Much appreciated. Second: wow, what a tragic and challenging experience for you and your family. I just can't imagine how hard that set of experiences must have been with your daughter. Thanks for the kind words ... let's keep plugging along through it all! Hang in

[@Velkro5000]

I love that you brought up Matt Embry! \m/

[@SpencersMSStory]

Oh yeah, he's awesome and has a lot for us MS folks! :)

[@DCFunBud]

Those dogs thought they where driving that car their concentration was so intense

[@WanderingStardust]

I'm in the process of being potentially diagnosed with MS-- I haven't yet seen the neurologist, but I'm glad I found your video. You and Melissa are so sweet together and I greatly appreciate your simplification of very cold, medical terminology into things that are easy to digest and understand for the layman. Anyway, hope you're still doing well, I look forward to keeping up with you.

[@SpencersMSStory]

Good to hear from ya and thanks for the support -- even if you're going through a rough time. I hope you get some answers and info either way with this potential diagnosis. Lots of info to take in for sure. (yep, doing great ... no new flares in 6 years on the diet)

[@mrms6524]

Hey Spencer, I found your channel last week and have binge watched all your vids! You're so inspiring and Melissa is equally as inspiring and strong like a rock. I'm following Matt Embry now too. Thanks!

[@SpencersMSStory]

Good to hear from you! It's cool that there are so many folks on KZbin and elsewhere posting and thinking about the disease. Be well :)

[@mrms6524]

@@SpencersMSStory I wish it’s easy to not think about MS. I’m always thinking of new approaches to improve living with it

[@aba1791]

you make a beautiful couple perfect for each other. Sending many blessings to both of you. Keep strong Spencer. Love your videos.

[@metaspencer]

Thank you so much!

[@user-jl7ym4en5b]

You are strong and focused. I am so glad that you shared your story. Do not feel guilty at all. It is great that you are winning. I am @ 16 years in to this disease, but am shot - I'm freaking out and cannot get up and also have had 3 back surgeries replacing 3 discs w/ artificial vertabrae, so the pain is horrible side by side with MS pain. I am inspired by your attitude. You are lucky to have Melissa as a spouse. What a team you two make. Very inspired, but sad as well. You totally hit the mark in describing the struggle of the psychological terror that you manage to avoid. It has gotten me and it is a cycle of adding more stress, (non stop).that only fires up the brain further. Your story tells me that I have to TRY getting back on the diet again and try to be more positive. I am @ 5 miles from the beach where I loved to walk . Now I can't get out. It is very isolating, sneaky, just insidious . Sorry, I just wanted to thank you for sending/ sharing a positive story. My best to you from LA. Stay strong.

[@SpencersMSStory]

Oh, LA! I love that city ... lots to do, see, and explore. Well, you're clearly struggling and I'm sorry to hear that. But I'm hopeful that you can find some renewed clarity and strength ... you can do it! This darned disease is so different for us all. Anyway, good to hear some of your story and hang in there.

[@SANDS78]

Thanks for reaching out to everyone. Your videos and many others helped during some pretty dark times. I probably need to post my story as well. Thanks man! -sands

[@SpencersMSStory]

Hey man, you're the best! It's always great hearing about and seeing what you're up to. Hang in there and be well! :) Spencer

[@SANDS78]

@@SpencersMSStory The real question is where's the dirt bike?!

[@metaspencer]

SANDS78 I know! I gotta get moving on that!

[@gsheinrichful]

Thanks for sharing, Spencer! Your video helps! I just got the diagnosis. And I'm so motivated to make something good out of it!

[@SpencersMSStory]

You can do it buddy! Do some research on the diets if you're interested -- that and Vitamin D really helped me turn it around. Be strong!

[@gsheinrichful]

​@@SpencersMSStory thanks for your answer, Spencer. I will do that! And I made a 1st video. For my annual video series, as you have one. 😊: kzbin.info/www/bejne/bZ-ykn2jaJJlo7c

[@SpencersMSStory]

@@gsheinrichful first video! excellent. I'm gonna go watch it right now

[@carolstender588]

Great update Spencer. It's nice to see you are blessed with a supportive partner. It was nice to hear her thoughts too. And Selma Blair is one courageous lady, I have so much respect for her.

[@metaspencer]

Just about March 2020 and time for another update! :)

[@mxgurl717]

Thank you I am 44 and MS is pretty new to me 2 episodes 1 in Dec 2016 and 1 in Sept 17 after watching the Selma stuff I've become pretty emotional even though I have been doing good for 18 months your video reminded me not to dwell on the what ifs deal with it if it happens

[@SpencersMSStory]

The thing to remember about Selma, for me, is that she got years and years of damage accumulated in her system ... you, on the other hand, have only had a few exacerbations: so that's a good thing! Keeping out systems mellow and not in flare-mode is the way to go. Anyway ... thanks for checking out the video! Be well

[@Lynneheal]

Thank you from me in the UK I have fought for nearly 50 years .#MattEmbry is the best .

[@SpencersMSStory]

nearly 50 years! I'm inspired! Thanks for reaching out and for checking out the video. Be well :)

[@rrfitnesslv949]

Did his diet help you?

[@fatemehbahramsari6042]

Wow! That's inspiring. May I ask how you're doing now? I'm a newly diagnosed and I can't stop thinking about my far future 🤦🏻‍♀️🤷🏻‍♀️.

[@ytubela]

Thanks for continuing to share, glad to see you're doing well.

[@SpencersMSStory]

Thanks for your support. Yep, doing well!

[@The282mike]

Loved your stories! I 21 years in and my story would be a lot like yours except for fairly severe onset of claustrophobia that I have only partially overcome. Keep fighting the good fight!

[@SpencersMSStory]

That sounds tough but I’m hoping you get through it. Nice to connect with you!

[@gorge419ts]

Your videos are awesome, so down to earth and real. Again I still have no idea what I have but much of what I go through is very similar. My eye doctor is connecting with different Nuerologists who think more outside the box and I am thrilled. He is excited to see me on the anti inflammatory diet and seriously in just the little time I have been on it which is about 2 1/2 or 3 weeks now I have seen stability in my symptoms. It has given me hope that I can look forward to some stability in my life regardless of what ever it is I have. It is an inspiration to follow you and I look forward to learning more from your journey.

[@metaspencer]

Tanya Schmidt so good to hear from you and I’m hoping you find some relief soon! Rest up!

[@marylightfoot4817]

Hi 2 u both. Just found ur vlogs and I wish u the best. I'm always trying 2 stay positive. Getting harder as my mobility is going south but able 2 get my steps in daily, eating right, etc. Best of luck. 🙂

[@metaspencer]

decreasing mobility is certainly not good, so try to stay positive! thanks for leaving a note and be well

[@rkwaltersjr]

Awesome to watch, thank you for sharing!

[@SpencersMSStory]

Thanks for the comment and for checking out the video :)

[@spicyspacecake]

Thank you for talking about your physical stuff now..we are almost the same age (I’m 6 months older!) - doing pretty good - I loved hearing all of this....can relate & yes, yes you should talk about all of it...I appreciated your words...all of them

[@spicyspacecake]

Oooo and melissa rocks!!!

[@SpencersMSStory]

Good to hear from you! Nice to know you are doing well ... that’s the ticket. Hang in!

[@spicyspacecake]

Spencer's MS Story thanks! I’m getting ready to go on our first vacation flying ... appreciated hearing that melissa got you on your first big travel....and that you had trepidation ... first year is super strange... oh and love all your cooling tips!!

[@SpencersMSStory]

@@spicyspacecake I hope the trip was/is a good one!

[@spicyspacecake]

Spencer's MS Story me too - I am laughing at all the kit I’ve got now prepping for the ocean - my husband liked the OG hat so much I got him one too....had does not have ‘the ms’ but he had ‘the hat’!

[@QueenoftheBounceBack]

You are awesome! Very Inspiring

[@SpencersMSStory]

Nice of you to say! Be well!

[@QueenoftheBounceBack]

Same to you! Anytime :)

[@jaktag]

28 years of MS for me.I am in a bad relapse now. I have never taken any DMD or even steroids for my MS and believe me i have had some really severe relapses over the years.I was going to the drs for years with strange stuff going on until one dr listened and sent me for an MRI and spinal tap.I went 8 years in remission in the early days but normally my relapses are every 2 yrs now days and seem to be getting worse the older i get.I often wonder if i would be better than i am now if i had been offered a DMD or maybe even worse who knows?

[@SpencersMSStory]

Good to hear from you but not good at all to hear about the relapses. I'm about 20 years in myself and 5 years without a relapse -- that's no good at all that you've had problems along the way. Hang in! Personally, I don't hear enough positive stories of the DMDs to consider them. Hang in!

[@deliverhope2]

Mat Embry is awesome! I just found his documentary and saw this recently. You guys rock. Now I hope you don’t need drugs but I’m still not sure. I’m still undiagnosed.... do you regret not trying meds?

[@SpencersMSStory]

No regrets at all. I'm doing great on this anti-inflammatory diet and Vitamin D ... alls good for me

[@desertshield]

You're a lovely couple!

[@jaskamakynen7766]

Hey Spencer, will you have an update this year as well?

[@SpencersMSStory]

Absolutely! It's that time of year again, so time to make a new video! I'm working on it. Thanks!

[@awakeningscotland]

Hi Spencer, can I ask what type of dogs you have here?

[@SpencersMSStory]

They are terrier/German shepherd combo dogs from a local rescue ... great dogs, sisters from the same litter, and they love to hike and be outside

[@awakeningscotland]

thanks. they're lovely looking but I love terriers so was drawn to them! really enjoying your content. I've not got a diagnosis but i've had suspicious symptons for over 15 years. Only just started learning about MS this last week and there's so many things I've had sympton wise. My fingers instead of coming and going are now constastly mildly numb, especially pinkie side of hands. My right thigh is often numb in winter. I think I had a MS hug in 2013, had paramedics in my house checking for heart attack! went away after an hour. I've had awful painful type of restless legs when lying in bed. really stiff ankles in the mornings. I need answers! I like the way you explain stuff. thanks@@SpencersMSStory

[@metaspencer]

It sounds like you've had some challenges for sure,@@awakeningscotland .... hand in there and perhaps in the meantime converting to an anti-inflammatory diet full time and getting your vitamin D checked might help ... be well!

[@donnadeford483]

U know ..I've had M.S. for 28 years ..but I can live alone ..I need a walker now and I'm dizzy alot ..the key is stress free 😊

[@SpencersMSStory]

You said it: stress is never a good thing! hang in there

[@donnadeford483]

@@SpencersMSStory u as well ..never give up fellow warrior 👍

[@cdsand45s]

are u on a special diet? love those dogs btw!

[@SpencersMSStory]

We love the dogs too! They're so fun. Yeah, I follow an anti-inflammatory diet: so I focus on eating mostly fresh veggies and fruit, no refined or processed foods. No refined sugars, heated oils, or gluten. Very little cooked food. It took some getting used to but I really like it now and I'm not sure if it helps ... but it doesn't seem to hurt! I also take Vit D daily, rest and keep my stress levels down

[@jaskamakynen7766]

Spencer, could you open up your diet a little bit more specifically?

[@metaspencer]

Sure thing! I have a detailed blog post on what I eat (metaspencer.blogspot.com/2016/10/modified-wahls-protocol-diet.html) but it's pretty simple: I focus on eating fruit and veggies, avoid gluten, eat no heated oils or refined sugars, and don't eat processed foods if I can avoid it. I do eat some fish for the omega 3s. Basically this is a version of an "anti-inflammatory" diet that tries to avoid foods like dairy and glutenous grains as they're thought to cause inflammation. I dont' know if they really do, but I"m not taking any chances :) No booze, only drink water, etc.