Multiple Sclerosis? Even So, It Is Well
Multiple Sclerosis? Even So, It Is Well
Do you want help living well with your Multiple Sclerosis, autoimmune disease, or chronic illness?
On this channel I share information on:
• Diet
• Exercise
• Sleep
• Kindness
• Supplements
About me:
• Living well with MS since at least 2006
• Plant Based Nutrition Certificate from eCornell
• Completed an 8-week Mindfulness Based Stress Reduction course
• Attended Dr. Caldwell Esselstyn's program on Preventing and Reversing Disease with Diet at the Cleveland Clinic
• Completed The Plant Fed Gut Masterclass designed my Dr. Will Bulsiewicz on the gut microbiome
• Completed the Center for Nutrition Studies Living a Whole Life: Essential Practices for Optimal Health course
The information on this channel is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. It is for educational purposes only. Always consult your doctor for professional medical advice.
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Thanks for your video...our early experiences were similar. It really seems to come down to the medical professionals we consult early on. Some are quick to diagnose and treat; others would rather wait and monitor. I had the latter kind, and it's motivated me to become my own advocate. In a way, maybe that's a good thing?
Thanks for watching Pam! Definitely a good thing!
MS, I dunno? But I'll tell You MY Fun First Episode (Exacerbation) IF IT IS, MS. (THIS IS RATED ® for a restricted audience). But Feel free to have a Laugh at my expense and its ALL TRÜE. Well there I was in a Hot Tub with a Ummmm... A Professional Lassie (Scottish for Girl) and My Eyes became Blurry + Pins & Needles in my Hands & my Tongue went numb & tingly & an Awful Gnarly Hot Headache began & Word tripping happened ~ thats IF I could find the Words to Putin' my mouth (Embedded Russian Joke) the poor Girl was very worried for me. (So was 👁️) Then I tried to extricate myself from the Hot Bath. (Hmmm). Which was difficult as my Legs were wobbly and weak. When I finally leveraged myself out, my Legs Buckled beneath me. Not exactly my fantasy girlfriend experience. But I Think I may have obliquely & spontaneously Diagnosed myself with Hot Bath method with "Perrplexxia" (Not her real name). After I sat on a Child's Swing in a Playground and cooled Down. And everything came good. So I tried this at home in a Hot Bath again DELIBERATELY (alone this time) & the same thing happened. That was in 2007. Still no formal diagnosis. I Can't & Am Too Scared to have an MRI (THAT'S ANOTHER STORY that could have been Penned by S. King). Sobthats ehy Ivsay I have SSSMS ~ Secret Sexually Specific Multiple Sclerosis + Self prescribed Humour® Hope you like my Anecdote from Australia. But Ice Pick Headaches and Myoclonic Seizures ain't Funny. And Neither is Having All my Teeth Out under the assumption they were Infected
💥🦷 🧠⛏️
@@MichaelBone-hj7sr you have a fantastic ability write your story! I do have a few videos on MRIs that you might find helpful and they can also give sedation if a doctor orders it. I encourage you to try and find a diagnosis. If it is SSSMS there are treatments and therapies that can help. In the meantime take exquisite care of yourself! And stay out of hot water. 😉
Dysphagia is Really Bad. I don't know if MS Causes mine. Maybe a combo of Anterior Bone Spurs (Located Right at my Epiglottis Turnpike) & a Nodulous obstructive Thyroid. MS? Maybe it is a Clandestine antagonist Too. All I know is, I haven't had a Care Free meal for Years. Every Meal is like a Siege with me being a Border Guard against Choking: Seeds, Skins, Certain Shapes or consistencies or Textures. At First I ate ice cream all the time like Joe Biden. Fish Tacos and Steak & Chips are but a Dream. Life is Joyless. No surgeon will Help me. And Shaving the Bone Spurs + Thyroidectomy are so do-able. If anyone cares Enough to imagine how it feels. Someone should send a Warship up the Yarra River and Rescue the Guy from Tyrannical Elements - Righteous Journalist
@@MichaelBone-hj7sr thanks for watching. I am so sorry you are experiencing all of that. I encourage you to keep advocating for yourself and seek different doctors to see if anything can be done.
Dr. Rose you may already be aware you have stage one lipedema. Please check out all the recent studies out before you yourself need one of these devices. I myself could not benefit from a Zeen as I also have lipedema in the upper thighs and exceed the weight limit. Also not in my budget.
I haven't be able to get into a doctor but I'm very intuitively sure that's what's going on with me. I'm hoping to be able to get into a doctor soon. I thought MS earlier this year after months of symptoms and it randomly came up like "Is this MS?" and it almost tapered off for a while, the major debilitating symptoms kind of faded...I was in a cooler climate and as soon as I moved back to a hotter climate they all started coming back, and the one constant one that never dulled is more constant than it was. I've been going to doctors for years KNOWING there is something going on since pre-teen years, but they've never find anything, and when all this started about a year ago they still kept telling me nothing was wrong, so I got fed up and quit trying, then got into a position I couldn't afford doctors anyway. This video is sooooo confirming, because I also just didn't/don't want to be sick, and started making life style changes, including quitting smoking, but honestly not even that has done too much for me. The meditating, the manifesting, etc and I can't shake that little voice either. Here's hoping I can get my answers, and if I do, I'm gonna come back to this comment and update! I recently started tracking my symptoms daily so I have a more put together way of explaining everything that goes on when I can get back in a doctor. My heart goes out to anyone and everyone who has and is going through anything like this, MS or otherwise because it's such a doozy. I've literally be crying every time I feel the overwhelming feeling "yes it's ms" and I was able to deduce it's just scary because it affects the brain, but a lot of people seem to live long lives.
@@theslrsystm thanks for watching. You and I sound a lot alike. Good on you for putting together a list of your symptoms. Sometimes seemingly disconnected events or symptoms can add up to a roadmap to a diagnosis. Please keep me posted on how it goes.
I tend to gaslight myself into thinking that I'm just being dramatic. Whenever I'm in pain. So when doctors tell me that it's probably nothing I believe them. But lately I've started to ask for more tests, just to be sure. I just finished figuring out all my allergies. But Now I've been having really bad nerve pain on my head for the last 2 weeks. It started with pain in my eyes. I've had that pain in my eyes before so I didn't think much of it, but a few days later it started to feel like a migraine and then my skin started to feel like I'm getting tattooed whenever something touches it. just a streak of my hair falling on my cheek is suddenly really painful. and putting my hair in a bun or a ponytail is impossible because of the pain. Sometimes my skin on my jaw itches, but it's not like rash, more like a nerve itching thing. My doctor said its probably just from the cold I've had the last 10 days and that I should come back if it doesn't get better. But I've never heard of anyone having these symptoms from a cold. I had a colleague who had a really sensitive scalp and then got other symptoms and eventually got diagnosed with MS. So I thought about this, but I didn't want to even think that, so I ignored that thought. Then my mom reminded me that I've been having pain in my legs for the last 6 years and I never got that checked because I thought it's just part of my restless legs syndrom. Then she said that there could be something wrong with my nerves and since I tend to get auto immune disease I should really get it checked because it could be MS (My mom is a nurse). I know I shouldn't google this and I should just wait and go back to my doctor, but I can't sleep rightnow because this is on my mind and I know a few people with very rapidly progressing MS, so I needed to know if it is always that bad. Thank you for making a more optimistic video about this. It really helped to ease my mind. I might not even have MS but the thought that I could have it was freaking me out and now I know that It doesn't habe to be as bad as the cases I've seen.
Oh honey, I came completely relate. It is so easy to dismiss our own symptoms. I encourage you to write down all the random symptoms you have experienced and bring them to the doctor. It might be MS or it might be something else. Keep advocating for yourself. Ask for referrals and who you should see next if they can’t find a cause.
When I was sent to do an MRI for my breast. Need it to be facing down with my arms up beside my head for 25 min, your face close to the bottom of the machine. My nose started to get stuffy, I thought I was going to die!! I prayed, breathed deep, tried to sleep on my gosh it was the most horrible test of all!!!
Oh goodness! I can’t imagine being face down in the tube and then getting a stuffy nose! Proud of you for making it through!
It seems that the term "Intermittent Fasting" and "Time Restricted Eating" are not being consistently used. I have been keeping my time eating window between noon and 7 PM for probably close to a year. Improving and reducing the window as I go. I think it has helped me. My husband has UC and has been doing this for years. It helps his system "heal" between feedings. I think true Intermittent Fasting would be stressful- that is where you go at least 24 hours between meals. He has done 2 or 3 day fasts and that is so stressful I wouldn't want to introduce that to my body what MS going on already.
Thanks for watching Laura. You are absolutely right, the two terms are not consistently used in research and articles. I am so glad the time restricted eating is helping you and your husband.
Today is July 4th of the year 2024. A sunny day. Happy Independence Day y'all !! Today we celebrate Freedom and that includes freedom of the mental shackles that MS brings. So we forget all that drags us down, we polish our best silver spoons of endurance And give it our all on this festive day I for one, am gonna treat myself to a Big Mac with fries and a coke and celebrate this American day while binge-watching a number of all-time classic streams, starting with Will Smith's 1996 movie Independence Day. Remember this: Today we are all 🇺🇸 Americans 🇺🇸 one way or another ! We're all freedom fighters, fighting what keeps us down. Greetings from 🇬🇷
Thanks so much for the super thanks donation!! Happy Independence Day to you as well! I love that you celebrate the freedom from the mental shackles that MS can bring.
Didnt have skin cancer untill sun screen came along
Thanks for watching. I haven’t read any research on that but I am definitely concerned with the chemicals in sunscreens.
@@EvenSoItIsWell Is zinc a good ingredient for sunscreen? As for me, I've had quite a bit of sun over the years and have gotten skin cancers. I hate them.
@@tomwilliams6744 I have read that zinc is good! It is one of a physical barrier.
It is the wheelchair for me. Diagnosed in April of 2020 at 62 years old. In a wheelchair in 2 months after diagnosis and have been ever since.
@@joeh6244 aw Joe, I am sorry it progressed so quickly. Are you stable now?
I have lost all use of my legs and core area has also become very weak. I do as much as I can to keep my upper body as strong as I can. I was a athletic and active man prior to MS. It is hard being confined to a wheelchair and I have pain every day. Pain is mostly in my legs.
@joeh6244 good on you for staying active as you can. I am currently looking at research out of the Brain Institute at the Oregon Health & Science University about the benefits of exercise on relapse rates and how it may help with remyelination after a relapse.
Doing my best, but I feel like I am fighting a losing battle
@@joeh6244 I completely understand. MS can be relentless and is particularly hard on the guys. Sending you healthy thoughts and good mojo.
fantastic
Thanks for watching!
Hi, Thank you for your video and advice. Best wishes to you! ❤
quite large for typical residential living spaces.. i've been looking at UPwalker to ?keep me upright and mobile..
I take meds for it. I'm fine I'm not dead 😮
Ive had MS for twenty years now.
@@dianeamaral8151 thanks for watching Diane. How are you doing after 20 years.
@@EvenSoItIsWell I'm using my walker because my wheelchair is broken but even though I get tired I never give up I just have to do things in a different way and I know my limits when I get too tired I rest
Good on you for resting when you are tired!
Love the “little voice”. God was speaking to you! Blessings.
It still amazes me that pushed it away so many times.
@@EvenSoItIsWell well, it’s a lesson we learn after much agonizing over a situation. That “voice” is always right when leading you to help. We let our egos take over most times thinking we can do it ourselves.
Be mindful that in northern latitude places like the UK have little sun and when we do everyone covers up with clothing or sun screen. Best bet always supplement with vitamin D3 daily. Also it's actually nearly 80% of those in the USA who are deficient in vitamin D3! I take a daily supplement of 10,000 i.u. of vitamin D3 following George Jelinek Overcoming multiple sclerosis program. Feel amazing ❤
@@user-pn2qp7gg8p thanks for watching and commenting. Yes! I included the article from OMS as it is great guide.
I have been walking and meditating with the sun and that has tremendously improved my mood❣️ and energy😍As always you are so amazing friend 💕
@@victoriousms3818 hello my friend! I am so glad you find it helpful and that you shared your story here! You are amazing. 🤩
There are people who are sticking to a carnivore diet because it keeps their MS in remission .
Thanks for watching. I have been following the information about the carnivore diet and MS. Unfortunately there are only anecdotal stories at this point. I will continue to watch for evidence and peer reviewed, large studies.
We're all MTHFR , one snp or both.
@@darrenfenton9280 thanks for watching. Yes, I have read of the possible connection of MTHFR and MS.
@EvenSoItIsWell b vits , but. zinc , copper , manganese for the nadph , nadph+ circle to complete.
In everything that you think is bad is same thighs good to… so watch out !!!😊😊😊
@@gabikynigou2523 thanks for watching!
I cant tolerate Humidity , so draining , i hate it . Colder weather is the best .
@@lindahaynes3475 I completely understand. Supplements can help when it is too hot and then when it cools down you can get outside for natural sunlight.
@@EvenSoItIsWell I live in scotland , its been warm and cold in the same day so a win win , i dont go out much anyway ,
Hi, Thank you for your video and advice. Best wishes to you! ❤
@@128titanic9 thanks for watching!
This is a hard sell when it’s over 90 degrees and 50% humidity-but you are 100% correct! Sunrise bugs or sunset bugs are the Florida options for vitamin D. ☀️
@@rawsomehappy whoa! Hot, hot hot in Florida! Stay cool my friend.
Get your free download of the health benefits and tips for safe sun exposure benefitsofsunlight.getresponsesite.com
I signed up with Teladoc Registered Dieticians , its very convenient since we can talk over the phone. The only problem is teladoc changes access to your R.D. every few months so there is little continuity of care. Also I need a supplement specialist as the R.D's can only advise in a limited way for supplements. They recommended some great ones , but there are others that I researched and wanted to add . The amounts of supplements,finding reputible manufacturers , and testing for supplement results is more something a supplement specialist can provide more guidance with in my case. And since I do not drive , I need someone who can meet over the phone or P.C.
Thank you for this valuable information ❤ God bless you Always 🙏 He will see that you help us and he will help you for sure. 🌟
Thanks for watching Sofia!
Tamping down inflammation is so scary at this time in life because it lowers your immune system. Covid is still out there. The flu and chest colds can be so dangerous for those taking any treatment for anything that reduces your immune system. But what other choice do you have?
Thanks for watching Kristine! You are right, the body does need some inflammation to survive and thrive, but removing excess inflammation by eating a healthy diet and choosing healthy lifestyle habits can help our immune systems to function properly.
I live in Brazil and would like to know the price? I found it very interesting because I have a fallen foot.
You can find more information here cionic.com/faq
My diagnosis was quick, within 2 weeks. It started on my 34th birthday(21 years ago), I couldn't turn a magazing page, my fingers on the left hand wouldn't grasp a piece of paper. Thought maybe I slept on it funny, but everyday after was worse. My Dr. was on holiday so I went to walkins and got same answer, maybe a pinched nerve. Then I had a lightning bolt up my left arm and it went numb, I went to a dr. in my clinic and she told me to pack a bag and go to hospital where I would be seen by a neurologist. I had an MRI, lumbar puncture, tons of blood work and by this time I had lost use of my whole left side, totally paralyzed. The started agressive steroid treatment and physio, I had MS. Was told if I got out of a wheelchair the best I could hope for was walking with a walking aide...I told my neurologist to watch, I would walk on my own again. Six months later I was walking(without an aide)and working out the gym. I've been off meds for almost 20 years as the side effects where terrible. At that time there were only 3 drugs to choose from. Now I'm a fitness trainer and nutritionist specializing in living a Blessed with MS life. If I hadn't been diagnosed with MS I know I wouldn't be as healthy as I am now.
@@angelaarnold4560 I love this so much!! I am so happy to see you are doing so well!
Ditched seed oils, processed foods, sugar, and increased animal based fats, and fatty protein, feel tremendous.
@@mjones1122 thanks for watching. So glad you are feeling better after ditching the oils, processed foods, and sugars. I would caution you about the animal fats as long term they have been shown to lead to worse outcomes and other health problems.
Rebecca from the KZread channel @cabanachronicles is doing carnivore for her ms.
I am age 74. I have been walking into doorframes since my 40s.
Thanks for watching. It is such a common thing for us! We should add that to the questions when getting diagnosed!
Achieve Healthy Hydration!
Yes!
Why not make assumption on symptoms, the doctors are not doing any better. They just want us to keep coming just to fill their coffers
There is something to be said for following our intuition isn’t there?
Thank you so much 😊😊 Im so much confident now than ever before with ms. Also could you please make a video on "how to prevent disability with MS"
Thanks for watching Leo! I will think about the topic of preventing disability. It is a challenging one as I am not a doctor and they really don't have a handle on why some people have more accruing disabilities. I will definitely look into the topic though.
He describes exactly my problem what I’m dealing with. I had a stroke 11 years ago
Thanks for watching. Will you look into trying the sleeve?
Nice video. Glad you are doing well after 18 years with MS, and hopefully you will continue to thrive for years and decades going forward.
@@DrBrandonBeaber thanks Dr. Beaber!
Ive lost mt sight throughmy left eye with m,s
Ugh. I am sorry that happened. How long ago did it happen?
I appreciate you so much for speaking about your experience. The first many years I was in such horrible cog fog, I lost my livelihood, and was then a 31 y/o mama of a 3 y/o. I had just begun dating my now husband 6 months prior to my symptoms.. I'm really late to the game of taking better care of myself, that self talk has been a def struggle. I love how you break it down to thinking of the person you really love and thinking how you'd want them taken care of, loved... As moms we are often drained taking care of others, or maybe just me.. I am 16 years in, living with primary progressive, working on a major diet and attitude shift. Thank you!
Hooray for you Anna!! You are right. It is never too late to start! Keep me posted on your progress!
“You always have something”. That’s what I heard from my parents and my husband. Years and years I’ve had subtle symptoms and the GP didn’t find any explanation. So, finally I didn’t go to a doctor anymore, it all must be stress, I thought. Well, it happened to be MS. Thank you for sharing your story, mine is quite the same.
I am so glad you finally received your diagnosis. I hope things are going better now!
I have scoliosis never wore brace or anything
@@pamreynolds6812 thanks for watching.
What is the actual price of this item if I wanted to purchase it right now outright
@@ppksrico5083 thanks for watching. It is a subscription basis product. You can see more here cionic.com/faq