LIFE UPDATE | why I decided not to start treatment for my MS, recent symptoms, and more
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- Опубликовано: 24 июл 2022
- Hey y’all! In today’s video I talk about my recent decisions with Multiple Sclerosis. Be sure to subscribe to keep up with the journey!
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It’s such a damn shame that girl had to msg you and basically prevent you from having your treatment that your body desperately needs right now… you can’t stop your MS with diet alone, ofc it plays a roll but that’s for less then 1% of ppl with MS (who can control it with diet but not stop it) the other 99% most definitely yourself included NEEDS TREATMENT… During the first 5 years of your MS is the most critical for treatment, waiting is EXTREMELY risky, I’ll have you a link to a video of a neurologist explaining exactly this. I really hope you get back on track with your treatment, I wish you all the best ♥️
ruclips.net/video/UDCVKe0-Bds/видео.html
Agreed. There is no "MS diet" or evidence that one specific diet is a cure. Just anecdotal reports. A healthy diet is beneficial, but should not replace a DMT. I know what it's like to hear new information, or someone's unique experience, and think "I should try that, that could work for me, it's meant to be!" but you also need to follow it up with research.
I've been on Tysabri for two years and I wish I'd started it sooner 🙂
May I ask how long you are going to continue on Tysabri ?
I would love to follow you on this journey! I have been having MS symptoms for about two months. They have mostly died down. I got an MRI last month and they found one spot on my brain and are going to be looking at my spine next. I met three women from my church with MS who are doing pretty well and one of them has approached it from a fully natural perspective. She became a full vegan and has a naturopath as well and in 18 years she hasn't had any major flair ups, just minor. The other two women do use MS medication and are also doing well. So i feel like there are a number of ways to remain stable. Thank you for being brave, sharing with those of us struggling, and sharing your journey. May God bless you
Thank you so much for this video 🫶🏻. I was just diagnosed 2 weeks ago and all I can think is that I have to be alright for my kids.
True same here
Im 55yrs with 17 yr old daughter
Diagnosed 1 yr ago....but symptoms from 2010
I have MS. I was diagnosed in 2020. I stared treatment 1 year later. In that years time I found the whals protocol and stared dieting the diet.
Looking at it now, for myself, I need both. I take the diet and my prescribed treatment. I still have flare ups. I don't know your full situation but my lesions are considered moderate to severe. What I've seen it that I don't always have active demylination anymore, but I would encourage you to try both
Thank you for sharing! I have a family member diagnosed with MS and will share this with her. I wish you the best in your journey. ❤️
My wife is 30 and she was diagnosed with ms about 4 years ago , we had our daughter shortly after and my wife started ocrevous two infusions a year , so far all is healthy
You are so brave… thank you. Having cancer or a chronic disease can be so lonely, and it always inspires me to see people like you brave enough to share their story, it really help all of us suffering to keep moving forward. I wish you all the best of luck, and I hope you continue to share your story as long as it makes you happy.
Thank you for sharing your story!! Everyone has things going on behind the scenes. Sending you all the love & prayers.
thank you so much for sharing your experiences. i was just diagnosed in april of this year so hearing about others' journeys have been so helpful. sending you a big hug!
OMG I am sooooo proud of you girl. I just commented on the other video of yours when you were first diagnosed. I will just copy and paste it, much easier. Everything happens for a reason. I'm so happy you came across this information before you started meds. YAY!
Oh hun, you're so young and brave. I know how scary an MS diagnosis can be. I'm 36 and was 5 and half months ago. It's very scary I know, I went through all the emotions when I was first diagnosed. But I was very lucky, I had someone in my life who had MS and recovered. I researched, I learned and am still learning. Be open and you will find the answers to be able to heal yourself and stop the MS from progressing. Change your diet, lifestyle, manage your stress and you can heal my love, without DMT's. I am about to start my own channel for people to see my MS journey so I hope you see it. Sending you much love and healing.
I have MS too and it’s only been 2 years since I was diagnosed. I’m still struggling and I feel like I’m lost. It’s very frustrating because it’s unpredictable and sometimes when I feel something it confusing if it’s because of MS or it’s something else. But thank you for sharing. 🧡 I know MS is very different from each person but I will look into this method. Wishing you all the best and stay strong💕
You are so kind and thoughtful to share all of this. You have inspired me to look into more alternative therapies for some of my own health issues 💜
❤️ Thank you for sharing your journey with us. I rushed to download this video so I could watch on the way to work. You have to do what feels comfortable for you. I have MS and I am at the do I go on treatment stage and what kind. Every experience (good or bad) is helpful to hear so thank you. Stay strong Stay positive
Praying that the Lord continues to guide your every step and gives you wisdom and discernment in this new season. God is faithful ! Xoxo Jen
Thank you for sharing your journey! Sending love and prayers your way!!
I did the same. I waited to start treatment, I thought I would just fix my habits and do what they did in the documentary, 4 months in and I had my second relapse. Just like everyone says in the MS society: your MS is benign until it isn’t. Your next relapse might leave you completely paralyzed.
Wishing you the best in your journey ❤️Everything will work out definitely your gut it’s important for you to be able feel healthy overall 💪🏻you can do this . Hugs and kisses 😘
Best of luck to you Wesli-ann. Everything happens for a reason. You have a lot of support which is a good thing. I can't imagine you going through this with no support. I'll be keeping you in my prayers. 🤍
Thank you so much!!
this helps me...
James 1:1-12
1. God is in control of the time and intensity of my trial
2. God has a specific purpose for my trial.
3. This trial is designed to meet a specific need.
4. The trial will prove to be good for me if I respond in faith.
5. This trial can strengthen my faith.
6. This trial is an opportunity to demonstrate perseverance (on the outside but even crying on the inside)
7. This trial will develop Christ-likeness in me. Transform me!!
8. This trial will help me measure my spiritual maturity. God is growing you up! (Things that used to trouble u don't anymore)
9. God will walk with me through my trial. God knows when you don't like him at the moment but he keeps the pressure on... he's so patient. While you're moaning and groaning, he's smiling about the greatness he's going to bless you with.
10. By God's grace and power. You will overcome this trial.
Thank you sooo much for the video, I'm low risk for ms but doc still.wants to test me for it, watching ms videos is very helpful, wish you the best healthy life.
Wow this touched me I have MS and just had an attack and no one is understanding it so I needed to hear this
True people judge, mock ,isolate u n expect u to be normal cos maybe u look ok
Your story is helping me ❤
Oh no , I am a new subscriber and didn't know about your MS . My Sister just got diagnosed last week and she is in a wormhole :( I need to tell her to follow you ,I hope it helps her . Thank you for sharing 🙏
I’m sorry you are experiencing a flare up. I hope you are doing better now. 🙏🏼❤️
I just got out of hospital. I had big complications after my spinal tap and I spent the past 2 weeks really sick and was admitted for one week. I’m trying to remind myself of what you said. “It will get better”. This is not a fun journey to be on. Nobody has the answers but we need to stay strong. I pray for you and thank you for sharing your story with us. Much love
I'm freaked out of getting the spinal tap, I just heard about people not liking their experience.
@@anabelpulido-perez1144 I understand you feel scared. My case is very rare. I have bad scoliosis so it was very complicated for the doctors to do this procedure on me..
But normally it’s pretty routine and you will be able to go home after a couple of hours and most likely not have pain. I send you all the strength and positive thoughts. You will be ok. Much love
Hi! I have MS I have had it for 12 years, similar to you I just got married so can totally relate, sending you lots of hugs - I was on Avonex for 11 years and hated the injections, switched to vumerity for the past year which is two pills I take twice a day and have had good results and it’s nice and convenient. I used to get extreme anxiety taking my avonex shot every Sunday, I would be in the bathroom for hours before I finally took the shot and it would make me sick every week - Vumerity has been a much better option for me. Obviously everyone is different but just thought I’d share in case you are ever looking into alternate treatment options where you don’t have to count on anyone 💙
I hate to hear about the flare up and hope it chills out fast! hang in there
whatever option you choose, you have to believe in it and follow your instinct! diet is not only about what you eat, I think you have chosen correctly, your body can heal if it has all nutritions it needs, at cellular level. ❤️ good luck!
Thank you Wessli-Ann, this whole MS situation is new to me (6 month-ish) going to my 2nd neurologist appointment in a couple of days (finally able to get an appointment), I'll see what he has to say I hope this is a good doctor for me. I had a good general doctor for me, unfortunately she moved away, left the practice. I'll watch Embry's videos, I don't want to go with medication treatment.
I think the diet change is such a great idea! I hope it’s been working for you since you posted this video. I’ve been dealing with MS since my diagnosis in 2016. I wish you best of luck in your journey! 🙏
Hey that's cool that we started the Best Bet Diet around the same time! I had been doing a variation of Wahls for years prior to this one and for the most part it was great for about 7 years with no relapses. But then things got worse with my MS all of a sudden in the past year. So I switched to BBD. My neuro is pushing me hard to start a DMT again now. I totally get why you decided not to do Tysabri. If you don't have nurses you can depend on to keep getting the infusions on time, that puts you at risk for a major rebound relapse. That would freak me out for sure. In fact I hate being on any med when I know I can't trust the medical professionals I have to depend on to be there when I need them. Praying this diet helps us both!
Nurses & medical professionals are humans too. they can get sick just like we can. The medical field has suffered a huge amount of turnover esp since COVID. I know it can be frustrating waiting a long time for appts, dealing with reschedules etc, but I think we need to afford them a little patience. As long as you can tell they are doing the best they can for you. If you feel like you are being neglected, or worse, disrespected, then definitely find a new provider.
@@YTStoleMyUsername Yes, many are doing their best, I know. But not all are. When I posted this comment I was under the "care" of a horrible (completely drug focused only) specialist and equally "care" of a terrible nurse. Thankfully that specialist moved away now and I was able to find a different one in another city that I can talk to once a year on the phone. I'm still pretty much on my own to figure out how to treat myself day to day, but at least I don't have the same sort of manipulative nonsense going on now as I did then. Keep in mind too that I live in Canada where we don't have many medical options because our medical system is so heavily corrupted that there's not much left anymore. Just "finding a new doctor" is most often not even an option. And in my province it's even worse as they still refuse to hire back all the staff that they fired for not getting the sh0ts. And even if they were to ever lift that ban, most likely most still would not go back because they have moved on to different careers now and won't subject themselves to such a horrible employer again.
I was diagnosed December 2022 start meds mid may .. at present I'm taking cbd, magnesium, vit d, b12.
Your pretty…:) hang in there..
I am on Kesimpta diagnosed March 2022.. so far so good. Reduce stress anyway you can! It really does help. Love yoga & fill your soul ~ whatever that looks like for you❤
Best from CO
Merry Christmas 🎄
What all is on the diet ?
Ask your Dr for meds for spasms, will help with the MS hug as I experience them often. Best wishes!
Have you heard of the COIMBRA PROTOCOL? I am in the process of being diagnosed and i came across this.
i love that med it works so great for me.
@wessli-ann singleton Hi love I am currently scared I get flashes in my eyes and here and there a blue spot in peripheral did you have that ? Asking because I get dizzy here and there.
A tip for acid reflux - sometimes it takes 24 hours or more for meds to help. Try to make sure you take it at the same time everyday. If it is acid reflux the meds should start working after a few days.. If not, it will help you better differentiate acid reflux from ms symptoms. I hope the meds help. Good luck!
Hope you do well, i think you will :)
Did you try to cut all type of sugars and take extra vitamins d3
At around 6;00 min. You say your muscles of mastication, are sometimes painful when you open your mouth, like in the morning and do you have to stretch out the muscles like all the rest in your body that cramp?
Also the "heartburn". I was treated for GERD but the pain is in the sternum area...I have that too, it comes and goes...but even having the pain in front of the neurologist they say," Its heartburn". They are so quick to diagnose symptoms and not relate it to MS sysmptoms, even so if everyone has heartburn, then they would be filling up the ER because anti acids dont work.........do they do that to everyone else?
Ocervus infusion only Twice a year, I have taken for 4yrs and stable?
yes
I'm so bad before infusion I feel better after ocervus infusion!
Hope the best For you! I really do! I was following you because you shared your story and you wanted to start by doing it with food and a Healthy lifestyle. But something happend and you switch up your mind and don’t give it a try. God didn’t give those mets! But like I sad, really hope you the best. I would love to set a live meeting for you and my best friend. She got the News, begin aug this year and don’t want to start anyrhing. Just because it doesn’t give her any outcoming when it comes to stop it. Hope you’re willing to just talk.
It sounds like you put a lot of thought/prayers in your decision.
MS is such a snowflake disease.
Every single person is different.
I started tecfidera when diagnosed. Had 4 old brain lesions, some on neck and spine when diagnosed. But it takes 5 months for it to even start working
So I hit it hard with anti inflammatory diet and exercising, prayers to leave in God's hands
Within a few months I went from 4 old lesions to over 30+ active lesions in my brain alone.
My ms ended up being aggressive RRMS. Steroids didn't work and same with my med tecfidera which hadn't even started working.
I started Tysabri.
I don't say this to scare you. I say this for you to just really watch your symptoms very closely. Most people don't have aggressive like me, can be very mild and diet works great for them
Unfortunately not for me. I now have permanent damage 💔. I am in remission but when damage is done- it's done. I do both DMT (TYSABRI) and diet.
I pray for you. You are not alone
Too much tums is bad!
Gerd. Can make you throw up blood and water give you heart burn?
Damn I wish I had been diagnosed when i started experiencing ms symptoms at 16. They kept dismissing me at the doctors.
I ended up in ER ar 32 and almost died because of one large active lesion on my brainstem. My brain also had about 10 old lesions from years of damage.
I do have permemanent issues with positional vertigo and sometimes my balance will just go wonky. Incredibly grateful for my dmd Gilenya it has done me good since 2015.
Thank you for this. I was recently diagnosed with relapsing MS on 6/14/22 and It seems like we’re on identical journeys. I would love to compare notes with you.
You are really brave to share your ms story out there. You know, the best decision maker is yourself: you are your own best advocate don't take it lightly. MS is a western disease(chronic condition), but nevermind that kind of rambling you probably know better than I do about this topic ;) I heard about people thriving with their lives with ms with or without treatment and who choose to stick to a certain diet or not and it goes well. Even though ms might suck at times it doesn't stop us from living our best lives!
I totally support your decision NOT to undergo treatment. I have MS...... maybe? I'll explain. I have had symptoms like MS for about 2 to 3 years. I have a sister-in-law who has had MS for 25 years. So, when I developed symptoms, that's what I thought it was, because my symptoms were much like hers. I have balance issues, now often but not always walk with a cane, have speech problems that come and go. Plus, other side issues like bladder problems, etc. When I had my MRI, my doctor said, "well I'm not sure it's MS, but it could be" (what does that mean? You're in doubt? lesions not conclusive for MS?). Then she told me I also have Lambert-Eaton's syndrome (LEMS). What are the symptoms of LEMS? Almost identical to MS. A matter of fact, it is often misdiagnosed as MS. LEMS can be a sign of lung cancer! So, had scans for lung cancer. No lung cancer. She said let's do a PET scan to look for other forms cancer. No other cancer. She immediately prescribes Ocrevus, an MS drug. Did I mention she has kept me the dark on this, I haven't even seen the results of MRIs or any other tests. I wanted to get a second opinion 6 to 8 months ago, because I didn't trust her (Didn't like how she treated me as if I didn't need to know the details, because I was too stupid to understand them anyway). But I didn't want to change doctors because I was trying to get on disability (I'm down from 40-hour weeks to 20, and I can barely do 20). Still not approved for disability but I need a second opinion. I'm not afraid to take Ocrevus, but I'm in the dark here. If I have LEMS, Ocrevus is likely not going to do anything (they basically have the same symptoms). You can't treat one and ignore the other. But I suspect I either have MS or LEMS, but likely not both. Ocrevus can have some nasty side effects too, but fear is not why I am refusing treatment. I just want to be informed about my health. Ocrevus may be the right drug for me? It might keep me out of a wheelchair someday. But I need to know for sure before I take a potentially dangerous treatment. I've been told (NOT by my doctor!) Ocrevus does NOT reverse any symptoms. Just slows progression. If my symptoms got better (went into so kind of remission), I could start teaching this fall (that was my plan before my symptoms, some like speech, are too severe to teach). I also used to be an avid hiker, training to hike the AT (Appalachian Trail). If I could get back to hiking, even if my balance was still not so good, I would risk Ocrevus. Since it will neither get back in physical shape to hike or teach, I see no urgency to start Ocrevus by this fall. Plus, my symptoms have sort of pleated for the past year and a half (not gotten noticeably worse). So, as I see it, there is no rush, and I have time for a second opinion. So yeah, if you do not feel comfortable with treatment, don't let them force it on you.
P.S. My doctor never even gave me a choice of what drug to take. Watching RUclips videos, seems like most MS patients are given a choice.
I wonder if she ever looked into hsct.
You'll get better, switch to more natural lifestyle, try sesame oil massage, oil pulling. If you're not on meds.. Try some alternative therapy like accupuncture, ayurveda. Incorporate yoga/ energy medicine by donna in your routine. It will help you. Lots of love 🌸
Hi! I also live in Columbia, but am looking for a new MS specialist and am looking at Charlotte. Do you have any recommendations? Are you satisfied with your current neurologist?
Send me a message on IG!
My 2 cents
start the treatment and do your diet don't go without treatment the damage that can occur is irreversible
Check Temp & Food & DMT meds.
MS Hug!
If you told those at the urgent care you have MS they "Should" have known what was happening. Sad state of Medical care today. So sorry you got bit by the dragon.😰 I chose not to medicate for MS because overly sensitive they all make me sicker. Just take what mitigates the pain. Definitely not the best way for everybody. Take care and be well.😁
Many patients have found that doing a parasite cleanse has helped reverse the M.S.
You can't reverse MS
I do not have MS, but another autoimmune disease. If the MS hope diet doesn’t get you where you want, definitely also take a look into the carnivore diet. Sounds crazy, but I’ve seen others with autoimmune conditions go into remission, including MS.
Does anybody else have statin-induced MS and is in a wheelchair? (like me)
What statin did you take?
Well I like to see people naturel in your case wath I see its your ring nails, make up try too be your self
I was trying to listen to you especially since my best friend has MS and I want to get lots of info to understand what she deals with. Unfortunately I couldn’t finish because of the zillion times you said “ UM” and then “ so yeah” very very distracting
You don’t have to watch my videos then! :) wishing your friend the best with their journey
Kindness & empathy is a great place to start. ❤
One other thing...diet is a big inflammatory issue....eggs = brain fog big time....don't eat all processed food, just organic fruit, and vegetables....but B12 or lack of it, your spinal cord will atrophy....so consult a person at a health food store on B12, folate, and D3 supplements.... your so young and beautiful....MS is a misnomer for your immune system attacking itself, so monitor your kidneys and liver is in overdrive so go get a Epstein Barr Virus blood test IGg IGA to see how hard your good virus EBV is in your liver that has turned bad causing Bcell/T cell issues...Its like a cancer, nobody tells you that and your diet and mental health is very important....so dont dwell on it as a killer, think of it as ... it's affecting everyone, but they dont know it yet.... I refuse all immune suppressant drugs, but tramadol "thats made in your liver" for pain, helps. Stay away from ibprophine its a kidney killer.
Since when do you have it