What EVERY Newly Diagnosed Person with MS Must Know
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- เผยแพร่เมื่อ 3 มิ.ย. 2024
- An MS diagnosis can be disorienting and full of emotions, especially if you don’t have the right information or support to begin the work of healing your immune system. Dr. Susan and KT Sloan (host of the popular MS podcast MS.UNDERSTOOD), who both live with MS, will explore the process of moving through an MS diagnosis and finding that new normal. They will also share what they wish they knew when they first got diagnosed, including “Must Have Tips” for building a healthy immune system.
You will learn:
How to navigate the weight of an MS diagnosis
How to put the right support in place
How ways to deal with uncertainty
How to pivot and find your new normal
5 ways to strengthen your immune system and begin healing MS
TIMESTAMP:
00:00 Intro
07:11 How to navigate the weight of an MS diagnosis
14:20 How to put the right supports in place
23:19 Ways to deal with the uncertainty
28:38 How to pivot and find your new normal
33:14 5 ways to strengthen your immune system and begin healing MS
38:01 Our programs
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DISCLAIMER
The content presented is for informational and educational purposes only and is not intended to be a substitute for professional medical advice, recommendations, diagnosis, or treatment. Always seek the advice of your physician or a qualified health practitioner with questions about your specific condition and needs.
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I was diagnosed 2 years ago but had symptoms for 16 years before the diagnosis. Unfortunately I had vision problems 7 years before diagnosis that went misdiagnosed as allergies multiple times and I now have significant permanent vision loss in my right eye. I started on tysabri right away and switched to ocrevus after 5 months due to JCV. Been stable and doing well ever since, but I also eliminated a lot of inflammatory foods from my diet. Thankfully I was always an active person which I believe served me well in maintaining motor functions all these years.
Nutrition is a much underserved area of MS care in my opinion. It took a lot of self education to learn what foods may trigger inflammation and some were surprising to me. TH-cam was an excellent resource in gaining nutritional education. A holistic approach to healthcare needs to be more of the norm instead of the exception, especially with neurological conditions like MS.
I'm sorry that you went undiagnosed for so long, but it's never too late to start making changes, as you already know. It took me 5 years to figure it out, and i'm a physician! I hope to streamline things others who want better health but dont have the time, patience, expertise to figure it out on their own. it is not an easy task! Would love to see you in my free weekly Q&A sessions for discussion centered on autoimunity and inflammation. truemedicinems.com/ms-health-and-wellness-webinars/
Officially diagnosed in 2008; been on Rebif, neutralising antibodies put paid to that! Then Copaxone: that totally failed me then onto Tysabri: then life stated again! So this year I was moved onto the Tysabri injections… don’t do it! Even tho it takes a fraction of the time to administer it has totally failed me - now I can barely walk (went from being able to make it around our town centre no issues to getting severe spasticity and folding myself literally in half!) now I do not even walk my dog a few metres! It’s completely ruined my life! Still waiting to see my neuro for him to say if they need to do anything for me but I’m sad to say I think it’s caused permanent brain damage and I’m screwed! It’s also happened to another friend with ms who visits the same hospital as me…. Not good at all! I know Tysabri is super strong but even that cannot fix brain damage! Please pray for me! A helpless man warrior in the uk!! 🇬🇧 oh I’m back into the Tysabri IV now and NEVER COMING OFF IT EVER AGAIN!
Unfortunately there is no one size fits all approach to MS, as you all have figured out. At this point in time, neurologists use their expertise to match a patient to a drug, hoping for the best protection with minimal side effects. But keep in mind that DMT's are just one part of your care. I always like to talk about using all of our tools, including lifestyle, natural supplements, and complementary therapies (like acupuncture) to improve health at the cellular level, which DMT's can't really do. So if DMT's haven't worked for you, there are still other solutions out there. So whether or not you're on a DMT, I think it's crucial to tap into diet and lifestyle to improve your health at the cellular level. This can easy symptoms, improve quality of life, and get you through your day better. It's not a cure, but it's a way of healing your body towards better balance.
I pray all gets reversed and you improve. 🙏💝
Get a homeopath
I’m glad you mentioned the fluorescent lighting. I thought I was crazy but I’ve been struggling with Optic Neuritis for 2 months now and it’s significantly harder to see when I’m working in my office. Waiting on an MRI to determine if I have MS or not.
Hi Rosalyn, definitely not crazy though I know it can definitely feel that way. I can’t remember if we mentioned this in the episode but perhaps trying some FL - 41 glasses that can help cut down on harsh light. KT swears by them. I believe you can get them from optical shops that specialize in low vision. you may also want to ask your optometrist or ophthalmologist if they know where you can get them in your area.
@@truemedicinems thanks for the suggestion. I have a follow up visit soon and will be sure to ask.
HSCT works. Why wait for neuro damage - try it when you are newly diagnosed
it's a decision based on risk vs benefits. HSCT suppresses the immune system so it can put you at risk for infections, which can be serious. It is not a risk-free procedure so it's important to take everything into considering before taking on risks. Often the DMT's can do a great job of controlling symptoms and slowing progress. Adding on lifestyle to that powerfully boosts that effect, and most people don't neeed HSCT.
Being 💯 Having MS sux, get your bucket list done & regret nothing Avg life with MS is 12 years shorter then everyone else.
New to the videos. Will your advice for MS also help for ME/CFS.
Absolutely. ME/CFS is considered an autoimmune condition as well. I'd love to see you in our free weekly Q&A's that target autoimmunity and inflammation, via zoom. truemedicinems.com/ms-health-and-wellness-webinars/
Get a homeopath
I'm angry!!!
Diagnosed dec.27th 2023
My 2nd neurologist placed me on Capxone inj. Baclofen, Ampyra, LDN
I'm 68 yrs.old. 1st. Yr. And I 'm pissed.
Can't afford PT co-pay. I watch a PT specialist on TH-cam
Walking is disappearing, have lesions in my thoracic at T3, T5-6, T-9-10 .
Im so sorry to hear this. It's a lot. to deal with. Have you reached out to any resources to help with copays? Sometimes your hopsital has programs. Also the Patient Navigator program at the National MS Society can help. www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator
@@truemedicinemsYou are godsend🙏💝
I understand your frustration, I’m 67 been dealing with MS for 30 years, PPMS so it was very mild at first, diagnosed 7 years ago, I’m deteriorating fast these days, trouble walking etc. it’s only now my neurologist suggested Ocrevus, the more I read a see on this drug I should have been on it years ago. They suggested this treatment 6 months ago and I’m still waiting. I’m up in Canada and pretty sure we have programs to help pay for the bulk of the cost. I’m so frustrated waiting for them to me going on this.
I'm on Kesimpta now, still poor walking
DMT's are just part of the solution. I'd love for you to join us during my Tuesday Q&A's to start adding in the lifestyle habits. There will be lots of great people there to support you. truemedicinems.com/ms-health-and-wellness-webinars/
Are medicines supposed to get things better or just slow the process?
@@RobdeKlerk-qg6lc most DMT's are designed to slow the progression of MS. Lifestyle habits work at the cellular level to improve the "environment" so our cell, DNA, biochemistry work towards a more balanced, health creating state.
@@RobdeKlerk-qg6lc DMT's slow the process. Lifestyle habits can improve your cellular health so that hormones, mitochondria, the gut, the nervous system can function more normally.
@truemedicinems thank very much
I don't like groups.
I do have a psychologist that helps
Glad you found care. Super important to address the mind body issues.
I love groups. I like them even more in person. It gives me a reason to getup, get dressed, and keep moving. Socializing also helps. Hate them or love them, either way, they really help. 🙏
Get a homeopath