21 Years With MS! My MS Story continues

[@ZeroKnigh00]

Thank you for sharing your story, I subscribed around 2-3 years ago when I got medically diagnosed. I was confused and scared, I just did know what to do and one of you videos really made me calm down and take things slow. You made me feel welcomed to this new world that I entered and your yearly videos really help me and I'm glad for the most part you're doing fine. Again thank you and god bless you on your future endeavors.

[@SpencersMSStory]

Oh my gosh, it's amazing to hear that one of these videos actually made a difference. That's just so cool. We're all helping each other out, I think, as I was helped enormously by videos and books I found at the time of my diagnosis. Hang in there!

[@stonz42]

Thanks for sharing your MS story Spencer. I'm glad that you're doing well. I was diagnosed last year at the age of 35 after 8 years of vague mild symptoms and temporary but recurring visual problems that were not present during my annual eye exams and misdiagnosed as related to seasonal allergies. My mother in law has been living with MS for over 20 years as well and lives with me and my wife. I'm very thankful to have her support through the diagnostic process, which was a long and stressful road that I recently wrapped up. I feel fortunate that my symptoms are generally mild at the moment and have improved with changes to my diet and vitamin D/fish oil supplements. Heat is an issue for me which is how I discovered your channel when I was searching for cooling vest reviews from MS patients. Not to say I'm looking forward to the journey ahead, but hearing your story gives me hope that I can continue to maintain a fairly active lifestyle by learning what works best for me. I wish you the best in your journey.

[@SpencersMSStory]

Good to hear from you and I'll just say that I often worried about the "journey ahead" but now, with no new MS problems in many years, I don't worry. So hang in there and I'm hoping your disease stabilizes for the better ASAP. Hang in!

[@sistersalima6829]

Thank you so much for your update. I always look forward to them. You’re a proof that MS is different for every person, it’s a spectrum. The disease hits each person differently

[@SpencersMSStory]

Definitely on a spectrum! I hope you're hanging in there

[@anabelena509]

I'm honestly very happy to hear that you are doing good. Sometimes future is scary, videos like this one make me feel hopeful. Thank you for sharing Spencer.

[@SpencersMSStory]

Hope! Oh that's good to hear. thanks for that!

[@rubensbarbosa4365]

Hi Spencer...Happy to know you doing well. At the end of your video you said that you struggling mentally about what may happen in the future...i think that watching videos of people that is really struggling with this disease may mess up our mind...just carry on doing what is good for you and try to avoid see thinks that may affect you mentally. All tha best.

[@metaspencer]

That is very good advice ... thanks for that insight! Much appreciated :)

[@ytubela]

Thanks for sharing. My young daughter was recently diagnosed with Clinically Isolated Syndrome and oligloconal bands present in the CSF not present in the blood. She just started DMT recently to hopefully prevent this from converting to MS. I feel we were very lucky to have caught this early on, as opposed to stories like yours where you are misdiagnosed for 17 years while you unknowingly accumulate lessions and progressive disability. While I disagree with your choice not to try DMT, I respect it given the success (or luck) You've had trying to curtail it through dietary means. I also can't help but think about Steve Jobs who ignored Western medicine when he was initially diagnosed with pancreatic cancer, a decision he wrote about regretting later on. I thank you for your videos and the courage to share your journey. For now, I'm keeping a private journal for my daughter's treatment and hope she can lead a happy life with no or minimal disability even after this chronic disease was diagnosed so early in her life. If I could, I'd easily choose to be the one with MS instead of her.

[@SpencersMSStory]

It's so great that your daughter (and your family) got the information so early ... lats can be done early on. We all make our own choices about medications, and I'm very happy with mine while knowing that it's only my own route through this thing. It's been almost 5 years now without an exacerbation, so I'm gaining some confidence about my choice ... I hope your daughter knows that there are many people living full and happy lives with nervous system issues. I'm confident she'll do well too! Thanks for reaching out and it's very nice to hear your perspective

[@carolstender588]

SO appreciate your ms story videos. It makes me feel like someone else really gets what I'm going through. I'm glad you are doing well, I am also taking the diet approach and so far it seems to be helping some. I still don't have a diagnosis, thinking about trying another neurologist, it dosnt really matter much, I know that's what it is. Thanks for doing these videos Spencer.

[@SpencersMSStory]

thanks for the encouragement! I felt a similar way about the diagnosis for many years, as doctors told me I had various things or nothing ... the info is desirable but either way you've gotta take care of yourself. anyway: be well!

[@rebmedina2835]

I'm grateful for your honesty about symptoms others won't talk about

[@SpencersMSStory]

thanks for that -- yeah, I think sharing info is always valuable

[@rebmedina2835]

@SpencersMSStory I wasn't offered DMTs. Just auto immune suppressants, painkillers, and anti-inflammatory. But living in a country there isn't anything else. If I lived in the city there would be more option. But I'm a farm girl and could never leave my town

[@SpencersMSStory]

@@rebmedina2835 from my perspective it's a good thing to avoid the drugs, as they don't work as well as an anti-inflammatory diet, rest, and vitamin D

[@misterz2719]

Didn't know u had Ms, amazing the work u get done, I have been wondering if that's my problems, or could be life stress, don't want to know, this year I'm going to try and have fun, hope you keep it under control. Take care.

[@SpencersMSStory]

I was having a lot of MS related problems for a while, but for the past 5 years I've been doing a lot better. So yeah, all good on my end. Taking care of that stress you describe is always a good idea. Thanks for the note :)

[@knittingthestash]

you're so brave to share all of this and help others build community :) Love!

[@SpencersMSStory]

oh, thanks love! couldn't do one bit of any of it without you :)

[@EvenSoItIsWell]

Thanks Spencer! I really appreciate your videos and your candor. Be well!

[@SpencersMSStory]

Always good to hear from ya! thanks!

[@deliverhope2]

Spencer don’t be embarrassed. It’s part of MS. It’s helpful to tell people so they know what it is. God bless you for your videos and spreading awareness. I’ve had optic neuritis too. Fun fun

[@SpencersMSStory]

Good to hear from ya ... hang in there!

[@babybaby5893]

You are so alert, with MS for 20 years. Wow

[@metaspencer]

Yep! Going strong

[@AlwaysJuNe]

Thank you for sharing. Now I feel like I was lucky being diagnozed from first attempt. I mean first time I went to see a doctor for my symptoms, but I belive a have it for maybe over 20 years...

[@SpencersMSStory]

A diagnosis takes the mystery away, so you can move forward knowing what's going on. Hang in there!

[@janiceruffin6447]

I love your honesty

[@SpencersMSStory]

Thanks. Nice of you to say

[@Dmogul]

Glad to see you are going good

[@SpencersMSStory]

Thanks man, and I always appreciate your artful video making

[@Dmogul]

Spencer's MS Story thanks man 😀😊

[@2007venture]

Thank you for sharing your story! I can relate to everything you've said and agree 100%

[@SpencersMSStory]

thanks for checking it out and for the kind words! :)

[@marylightfoot4817]

Understand the bathroom issues...just figure hey could happen 2 anyone. Hits me sometimes when I am out walking. Just take precautions. Self cathing has helped some. Hang in there! 🤓

[@SpencersMSStory]

Good to know we're not alone! hang in there

[@thegreypath1777]

I hate pain. Thanks for your videos.

[@SpencersMSStory]

Yeah, it is hard to work with. I've always thought "it's just in my mind" but that's only works so much. Take care!

[@lawrencewheeler6672]

Spencer, so good to see this year's MS Story--glad to know that you're doing well! (I'll also confess here to being a complete addict to all your prison bus and other videos. Genius!)

[@SpencersMSStory]

Lawrence! In that case I'll have to post another prison bus video soon ... always good to hear from you and to see your DYNAMIC and AMAZING art! :)

[@DoorDashers791]

Ringing in both ears 16 days

[@fabiolavelasco4979]

I’m very grateful with you for yours videos and for sharing your experience. 🌻💙🧡

[@SpencersMSStory]

Thanks! Nice of you to say

[@DoorDashers791]

Thanks for the video I appreciate it

[@sugarhoneysweets]

Thanks for sharing :) I am glad you are doing pretty good!

[@SpencersMSStory]

Thank you! 😊 Nice of you to say!

[@johnpossum556]

I didn't realize until now we are the same age. I always thought of you as younger because you're more fit than me. I spent almost 20 years on the opiods for neck & neuromuscular pains. Scoliosis induced isses, mostly. Which led to me being on another med which has given me a 4 year case of diarrhea. It's so awful much of the time I don't even dare leave the house because I'll go 20 feet and then I have to run to the toilet again. It's really the worst! Now another med increased my blood sugar levels until I have diabetes. Though the real pain came after a botched thoracotomy (rib removal) which left me with cubital syndrome. It's that funny bone pain only I live with it 24/7 and my left hand lost most of its muscles. Constantly zinging from my elbow down to my ring and pinky finger. I can't operate my thumb any more so I am officially "ape handed" and I kid that I am down the evolutionary ladder from every one else but it really is true. They've dehumanized me into an ape, literally. I know what you mean about the negative thinking but it's kind of impossible not to think of your limits otherwise one might hurt themself even more. I have taken up adapting my bikes so the brakes will work in only the right hand. That is when I feel the best when I am flying free on a bicycle! If any one out there is listening and you have medical problems consider getting a bike and do what you need to in order to adapt it to you. I've even met double leg amputees on the trails who have hand powered bikes. There is always a way to adapt it to your individual situation.

[@SpencersMSStory]

Oh man, I didn't realize you had these challenges. (And sorry: missed this comment somehow a while back.) I guess we've all got our challenges, and I know mine are my own but they can still get me down from time-to-time, and not only "if I let them" as people say. Anyway, it's always good to hear your advice and experiences. Hang in there!

[@JoeyTV]

Hi Spencer, I was wondering if at any point during the 16 years you were undiagnosed you had MRIs that were clear? I am trying to get diagnosed because I think I have it but my MRIs were clear. I have an evoked potentials test next week.

[@SpencersMSStory]

What happened to me is that I had an incompetent neurologist order just an MRI of my brain that ended up being clear, and then that doctor said to me "you definitely don't have MS." In fact, my spine MRIs many years later revealed lesions. This is not that common, but it happened to me. I found that the evoked potential test was interesting but I don't think anyone considers it definitive as a test for MS. It can, however, show diminished nerve capacity and so on. Good luck!

[@carolinegray3150]

Your honest talking about, keep feeling better

[@SpencersMSStory]

thanks!

[@DoorDashers791]

6 MRI'S brain neck and spine with and without contrast. Takes hours. Unbelievable

[@Flo2998]

Hi Spencer, I am in the process of being diagnosed . I have susbcribed to your channel and your videos are great. Really. One of my worries is how to keep working? What job do you do and how do you cope with days at work? Merci from Paris

[@SpencersMSStory]

Thanks for reaching out and good luck to you in this challenging time. Getting diagnosed can take a lot of energy, so make sure to rest and take care of your stress. As for working, I was a professor at a university when I was first diagnosed, and my symptoms did make me make some changes. I now do construction work outside and face some different challenges. So it all depends on your symptoms and job. For me, I'm not limited by MS very much, but that's not true for everyone.

[@Flo2998]

@@SpencersMSStory thank you very much for your reply and encouragements. Your videos are so encouraging and giving this honesty is so valuable to your audience, so thank you. I had very very minor stuff from the disease and if I hadnt had optic nerve stuff, I wouldnt know I have this. I currently do admin work so I will defo see with time. Merci again.

[@nelliejohnson609]

Are you on any medication for MS? I am taking Tysabri infusions right now

[@metaspencer]

No I don’t risk taking the meds. And no need for them in my case given the effectiveness of diet

[@DoorDashers791]

Hello I have multiple sclerosis since 2003 I'm 50. I just got diagnosed with pots syndrome 3 weeks ago..I'm rough god help me

[@SpencersMSStory]

hey, we're both 50! that POTS syndrome sounds like a potentially tough one, so here's to hoping your circulation improves. Hang in buddy!

[@DoorDashers791]

@@SpencersMSStory thanks. My multiple sclerosis is bad under stress and I quit smoking and stop drinking soda pop. It flared up bad

[@SpencersMSStory]

@@DoorDashers791 yeah, I've had exacerbations in the past due to stress ... those are good changes, though, so hang in there!

[@Timefor8B]

Are you taking treatment or all natural???

[@SpencersMSStory]

All natural diet and vitamin D ... the treatments never appealed to me

[@notasable]

Where you doing anything specific to allow years relapse-free?

[@SpencersMSStory]

As you saw on that other vid: low stress, vitamin D, anti-inflammatory diet, exercise ...

[@DoorDashers791]

Any treatments

[@Dmogu]

awesome

[@SpencersMSStory]

thanks man

[@carolinegray3150]

Be safe you and your wife

[@SpencersMSStory]

thanks

[@DaniSnov6]

Did you ever decide to start treatment? Or still going all natural?

[@SpencersMSStory]

I've avoided the meds for almost 5 years now, and no exacerbations. So I decided to avoid the pharmaceuticals and go with an anti-inflammatory diet, low stress, and that stuff. Seems to be working!

[@nelliejohnson609]

I have accidents at times with bowels and also I Sam 53 years old

[@metaspencer]

Hang in there!

[@SANDS78]

Fuck Yeah Bro

[@SpencersMSStory]

You're the best, man! Keep it real

[@DoorDashers791]

Smoking makes multiple sclerosis worse

[@carolinegray3150]

You are dealing with it

[@SpencersMSStory]

I try! Of course, I never know what's next, but that's all part of it

[@vondabyers9425]

Do you have changes with your personality? Irritated?

[@SpencersMSStory]

No nothing like that, but I could see how that could happen with a serious diagnosis, pain, etc