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. KZread 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.

@truemedicinems

7 ай бұрын

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/

Was finally diginosed yesterday after 3.5 years of doctors believing it was a TIA Stroke. So I have MS I'm sitting here like what next... focus & determination period.

@truemedicinems

7 күн бұрын

If we can be of support, please reach out! Email: Livewell@truemedicinems.com . Also KT is a wealth of resources and she can be reached as well through this email and through her podcast. I remember how hard it was in the beginning but there is a whole community here to support you as you move through all the emotions and challenges. ❤

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!

@truemedicinems

7 ай бұрын

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.

@sylviaolney-qj8jd

6 ай бұрын

I pray all gets reversed and you improve. 🙏💝

@Ane127

2 ай бұрын

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.

@truemedicinems

3 ай бұрын

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.

@rosalynschmidt1950

3 ай бұрын

@@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

@truemedicinems

3 ай бұрын

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.

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 KZread Walking is disappearing, have lesions in my thoracic at T3, T5-6, T-9-10 .

@truemedicinems

7 ай бұрын

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

@sylviaolney-qj8jd

6 ай бұрын

@@truemedicinemsYou are godsend🙏💝

@1999zrx1100

3 ай бұрын

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.

New to the videos. Will your advice for MS also help for ME/CFS.

@truemedicinems

7 ай бұрын

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/

@Ane127

2 ай бұрын

Get a homeopath

Being 💯 Having MS sux, get your bucket list done & regret nothing Avg life with MS is 12 years shorter then everyone else.

@truemedicinems

Ай бұрын

Totally agree with getting that bucket list underway - The data in this area is a bit murky and the gap in life expectancy between MS and non-Ms has shrunk quite a bit with all the new ways we are dealing with MS (DMT's, lifestyle, etc).

I'm on Kesimpta now, still poor walking

@truemedicinems

7 ай бұрын

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/

@RobdeKlerk-qg6lc

6 ай бұрын

Are medicines supposed to get things better or just slow the process?

@truemedicinems

6 ай бұрын

@@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.

@truemedicinems

6 ай бұрын

@@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.

@RobdeKlerk-qg6lc

6 ай бұрын

@truemedicinems thank very much

I don't like groups. I do have a psychologist that helps

@truemedicinems

7 ай бұрын

Glad you found care. Super important to address the mind body issues.

@sylviaolney-qj8jd

6 ай бұрын

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

@truemedicinems

Ай бұрын

Homemopaths are great and I do use their remedies along with all the other things I do to treat MS. Even though there is not a lot of science backing up homeopathic remedies, I do find them helpful for common, day to day ailments like stomach aches, headaches, etc.