Newly Diagnosed

[@cherylwalter73]

You're making me laugh! "Chill out!" 😅

[@cynthianorman44]

Thank you. (The birds in the background are beautiful). Thank you💖

[@SarahOwens77]

Thanks for your videos. Newly diagnosed with MS and Lupus and before i go to all the specialists i am being sent to i went to the woods and had a good scream and cry and spiritual grounding.I went to the beach and appreciated the life i have had. I found a great therapist. I have read everything i can get my hands on watched a thousand videos and found small group online that i feel comfortable asking questions. I am taking this one day at a time. Doctors in my opinion are giving their suggestions on what i should or shouldn't do. It is my decision. Now i am ready to fight for me!

[@SpencersMSStory]

You sound incredibly well informed and self directed. That's so great. Without self direction the doctors and their pharmaceutical bosses will take over. I hope you get that inflammation down soon, and in fact I know that you will. Lots of living is ahead of you ... good living!

[@zombiebros8138]

Hey Spencer. My name is Samantha. I really enjoy your videos on Ms and your approach to managing and monitoring the progression of your disease. I haven't been officially diagnosed but I have had various syptoms over the years and my last MRI showed lesions. I just haven't felt ready to schedule with a neurologist to see what they have to say. It is interesting that I have looked all these years for a diagnosis (MS has always been the conversation) but I'm reluctant now that the scan actually shows something. Anyways, I guess I just wanted to say thank you for always being transparent and seeming so hopeful. Good luck on your journey!

[@SpencersMSStory]

Hey, good to hear from you! I went back-and-forth over the many years before my diagnosis, really wanting to know and not wanting to know. So I think it's okay to follow your own instincts regarding a diagnosis or not. In the meantime, of course, no matter what is causing your symptoms, there is a lot you can do to be well and take care of yourself. Anyway: thanks for the kind words and for sharing your story! :) Spencer

[@SjSalvidge]

Thank you for posting this. Got diagnosed in October but looking back in the last 6-8 years, I can see flair ups. So my neurologist not only talked to be about the medications but diet and exercise. My diet has changed dramatically before the diagnosis because I suddenly developed food allergies but since then, it has changed even more. I have a great support group around me and I am finding more online. My wife and I are trying to journal my MS journey and this just makes me want to do that more. So again, thank you!

[@SpencersMSStory]

I think journaling the journey is a great idea that is both therapeutic and practically helpful. Changing diet stuff can be tough, as I find a routine much easier to follow. Anyway: great hearing from you and hang in there!

[@spicyspacecake]

Loved reading this one & hearing that someone else freaked out and thought ‘I have to change everything quickly...that my days are numbered...that i need to maybe sell my house’ - I’m right at 11 months since diagnosis.... & while no longer “fresh”....I so appreciate your words...when I was fresh, I just couldn’t chill out and take things slow... at 11 months, your words are helping me trust my gut and where It’s all going.... and that slowing down is ok Thank you!

[@SpencersMSStory]

Hey, you're almost at a year! I have found that time, if spent well, is a great thing to help reduce the stress and anxiety associated with the diagnosis. Thanks for the comment and for checking out the video! Be well

[@carolinegray3150]

When he falls he just gets up again

[@SANDS78]

Good advice bro, especially on having a second opinion.

[@SpencersMSStory]

Oh yeah! I hope you’re well

[@gorge419ts]

@@SpencersMSStory Love it Spencer all of it is true.I am still currently in the undiagnosed population but I have come to be accepting of it. I focus to find the healthy life style and to do my best to take it as it comes. Connecting with others with neurodegenerative diseases as well as others with my specific type of acquired nystagmus with vestibular disorder is incredibly helpful.

[@SpencersMSStory]

@@gorge419ts That all sounds very healthy and smart. Be well!

[@gorge419ts]

@@SpencersMSStory Thankyou Spencer and same to you.

[@carolinegray3150]

He’s doing okay

[@kara7197]

First of all thank you fo sharing your thoughts and opinions. I think your last advice on not listening to the doctors though is quite dangerous and I'll tell you why. MS is a disease who varies a lot from person to person, some responds well to treatment, others don't and have to go through a lot of them before finding the right one or, in some cases, will never find one and will keep deteriorating. I was diagnosed 10 years ago and decided to not treat it, never had a problem in 9 years until it attacked again and this time the numbing sensation did not get better. My mom has had it for 30 years, takes interferones and never had a problem again. One of my friends (I come from a place with a high incidence of this disease, which is a sunny island, so the vitamin D theory lacks evidence here) had to go through basically every known treatment and still hasn't find the right one in over 10 years. Another friend doesn't treat it and is doing very well. So saying I don't treat MS and I'm doing fine doesn't make any sense, you are doing fine because in your case the disease is progressing very slow. But this is just YOUR case. I wish you said that in your videos instead of pushing people to ignore medical advice. I wish you would say that MS has no known cause and no known cure and you decided not to treat it and you're doing fine, thankfully, but that everyone is different and responds differently so they should listen instead to their doctors. Reading books on MS is great but it will never replace 9 years of university studies on the subject. Ill people are very vulnerable, and of course nobody wants to take heavy medications with lots of dangerous side effect, so listening to your advice will ultimately convince someone to do what you are doing, with potentially devastating effects.

[@SpencersMSStory]

I understand where you’re coming from and respect your opinion. I do treat the disease with diet , rest, stress reduction, vitamin D, and more. It’s the meds I avoid and docs who are paid by Big Pharma that I question.

[@kara7197]

@@SpencersMSStory Thanks for replying. I am very happy that this is working for you. I also changed my life 10 years ago when I was diagnosed. I follow a very healthy diet, I exercise and I became a yoga instructor, I supplement vitamin D although I have never been deficient and I am lucky enough that I don't need to work so I lead a very stress free life. Nonetheless MS attacked again, and this time much worse than 10 years ago. So what did I do wrong? I am not following any therapy still, I am seeing different docs and taking my time to decide. I know that every treatment is heavy on the body and I fear collateral effects. But I also fear that the next attack would be much worse. I hope you will keep managing your MS without meds, like I did for 10 years and like a bunch of people I know are doing. But again this is your and somebody else's case only. You are making people who choose to take meds and trust doctors feel in the wrong, instead of promoting a dialogue for sharing different experiences.

[@SpencersMSStory]

@@kara7197 Yeah, you make a good point: I always try to suggest that people need to find their own path that works for them, and I know that MS is a very variable disease that hits us all quite differently. So I take your points and understand where you're coming from. Susan Sontag has a great book (Illness as a Metaphor) where she talks about how people with cancer are often blamed for their disease. I don't think there is any way of knowing if you did anything to cause your most recent exacerbation, and there isn't even any value in such an inquiry. Instead, one just needs to move forward. I'm wishing you the best as time goes on and things develop

[@haninshuaib7289]

How are you doing now ?

[@carolinegray3150]

He’s strong

[@carolinegray3150]

Be strong

[@technicholls]

Thanks for the advice Spencer. One thing I might add, connect with your spiritual adviser. You may or not be religious but there is something very helpful in seeking the assistance of a higher power.

[@SpencersMSStory]

Oh yeah. Very true for many!

[@mxbl_guitar]

Good video. I've made the mistake to do a lot of quick and not well thought decisions when I got seriously sick. I got a pacemaker implanted two years ago at the age of 25. Thanks for sharing your story. I totally agree on the book/information topic. You should become a student of your sickness. And move on in your own, new tempo... Btw. which diagnosis method confirmed your MS? Lumbal punction?

[@SpencersMSStory]

Good hearing from you. For me MS was confirmed by symptoms + MRI or spine + lumbar puncture. So all three diagnostic tools

[@longfortlad]

I hope you doing well dude

[@metaspencer]

Thanks man! Yes, 6 years since my own diagnosis and doing well. Take care!

[@longfortlad]

@@metaspencer me diagnosed since 2013, never found informative, absolutely awesome source as your channel, I just want to say big thank you, am currently relapsing watching you, gaves me power and mind youga, thanks brother. I wish you well keep doing video or a blog , your talk better than my neurologist who always says I will be on wheels chair , you more positive for me Bro.

[@metaspencer]

@@longfortlad Hang in! Relapses suck but you'll feel better soon I hope

[@thekingbee100]

Good one.

[@SpencersMSStory]

Thanks! be well

[@carolinegray3150]

My husband might need a wheelchair if his falling gets worse for now he uses a walker for his balance but he still can fall over

[@SpencersMSStory]

Sorry I missed this comment originally ... that sounds challenging and I hope he's doing okay!

[@carolinegray3150]

His balance problem is caused by a build up for fluid in his leg and foot by the kidneys

[@SpencersMSStory]

I see