How I’m Living My Best Life with Multiple Sclerosis | Robin Brockelsby | TEDxUniversityofNevada

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Күн бұрын

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@jaemonroe1
@jaemonroe1 3 жыл бұрын
I was just diagnosed today and I’m trying to cope so prayers are welcomed.
@sonamkosandal8233
@sonamkosandal8233 3 жыл бұрын
Don't worry, it'll be all fine;)
@jaemonroe1
@jaemonroe1 3 жыл бұрын
@@sonamkosandal8233 thank you 😊♥️
@YugiohUndercoverIndonesia
@YugiohUndercoverIndonesia 3 жыл бұрын
You'll be fine.
@failuremoon3063
@failuremoon3063 3 жыл бұрын
I was diagnosed a week ago and we’ll both be fine 💪🏼
@ashleighmartinez8448
@ashleighmartinez8448 3 жыл бұрын
Stay strong, you've got this! I was diagnosed at 21 and I'm now 11 years into this journey. There is hope. Keep your chin up and focus on all the good things that come your way. Prayers! Xoxo
@bingbong7607
@bingbong7607 2 жыл бұрын
I was diagnosed in 2018, my entire right side was seized up and unusable, balance was thrown off and could hardly stand. With physical therapy, modern medicine and dietary change I was able to get back 100 percent health. Doctors thought I would only regain around 50 percent strength. A message to all MS'ers stay positive, don't get down on yourself. STOP eating processed foods. START to meditate and exercise daily. This disease doesn't make you weaker than the average person, it actually makes you much stronger, and can give you a much deeper appreciation for life.
@juliamckay5032
@juliamckay5032 Жыл бұрын
THIS.
@mary-vy3mo
@mary-vy3mo Жыл бұрын
everyone recovers at beginng.. you still have ms...spms hits at age 40-50..
@Sbannmarie298
@Sbannmarie298 10 ай бұрын
agreed
@jamesm2569
@jamesm2569 7 ай бұрын
Thank you for this 🙏
@cheriebinns6610
@cheriebinns6610 4 жыл бұрын
Love this! I have had MS for 45 years now and am back at work in my late 60s because I can! We need these success stories with the emphasis on life style changes.
@jaconnajackson1012
@jaconnajackson1012 4 жыл бұрын
Beautiful!!!!
@joannbarthold3032
@joannbarthold3032 4 жыл бұрын
Please watch Dr Wahls ted talk if you haven’t already. God bless
@lindamotupalli8998
@lindamotupalli8998 4 жыл бұрын
Cherie Binns a
@60sChildBorninthe80s
@60sChildBorninthe80s 4 жыл бұрын
Amen!
@lisahickman5926
@lisahickman5926 4 жыл бұрын
@Robin Brockelsby Thank you for your story. It help me.
@samarsafavi7403
@samarsafavi7403 3 жыл бұрын
I got MS when I was 15, at first I was so scared but and now I am 23 and feel good because I believe nothing happens without reason. God never gives you something which you cannot handle. God bless you all.
@CarlosHernandez-tg9ct
@CarlosHernandez-tg9ct 3 жыл бұрын
Amen! Never give up!
@camrynmcgough2612
@camrynmcgough2612 3 жыл бұрын
I was diagnosed with ms when I was 15 too and I'm also 22 now, so I completely understand your struggle..
@samarsafavi7403
@samarsafavi7403 3 жыл бұрын
@@camrynmcgough2612 how are you feeling now? i actually have not talked to anyone who can understand me!
@camrynmcgough2612
@camrynmcgough2612 3 жыл бұрын
@@samarsafavi7403 im feeling good! some days are definitely better than others (especially with the heat) but I try to stay positive and get plenty of rest. you're more than welcome to message me on Instagram too @camryn_mcgough if you wanna talk more!
@sonamkosandal8233
@sonamkosandal8233 3 жыл бұрын
I had Ms when I was 16, now I'm 19 and I'm doing well
@iristorres2704
@iristorres2704 3 жыл бұрын
My mom was diagnosed with multiple sclerosis in christmas of 2011, within a week. She felt some of those symptoms, the tingling in one of her legs and the loss of sensibility in one of her hands. She always felt something wrong with her hand but the doctor said it was nothing... For years! In 2011 she felt those symptoms intensified, so me and my brothers made her go to hospital because it wasn't very usual. She was diagnosed with multiple sclerosis and came out of hospital in 24th of december. It was a very difficult journey for her. She had to change her treatments for two or three times because her disease was getting worse after the flare-ups. She stopped working because my father thought it was better that way and because that option was possible (fortunately my father has a stable job). Today she is a very healthy and strong woman, she faces life with an huge and strong smile. She goes almost everyday in long walks, she is an excellent and active grandmother, she eats very healthy and, most important, she tries to run away from stress and big emotional changes. I'm very proud of her. She's the person I love the most in my life. Because of that, now I'm studying Biomedical Sciences and I want to take my PhD in Neuroscience and understand better this disease, because my mother always lived for me and always gave me everything, so if there's a chance I can try to make up for everything she has done for me, I will sure do it. I wish the best of luck and very strenght to every person with this disease, and remember, there will always be someone in labs and hospitals trying to find a reason why, a better treatment, a cure... We are out there! :)
@bifura-san2120
@bifura-san2120 2 жыл бұрын
Thank you very much u really made my day :)
@noexcuseschristians
@noexcuseschristians 2 жыл бұрын
You are such a thoughtful daughter. I'm sure your mother is blessed to have you as a daughter 🙂
@iristorres2704
@iristorres2704 2 жыл бұрын
@@bifura-san2120 I'm glad I did :)
@iristorres2704
@iristorres2704 2 жыл бұрын
@@noexcuseschristians Thank you for the kind words :)
@taittinger1092
@taittinger1092 2 жыл бұрын
@@bifura-san2120 I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@kotrynakrupauskaite7939
@kotrynakrupauskaite7939 4 жыл бұрын
I feel like I might cry. Battling MS is hard and unpredictable, sometimes it gets me all in tears and asking "why me?". It is hard even trying to explain why I'm so tired, why I sometimes walk without coordination and why sometimes I don't really feel my left hand. You know what? I'm tired, but I'm alive. I'm walking weird but I'm walking. I sometimes don't feel my hand but I'm capable of moving it. Not gonna let this defeat me, MS is my new bestie and I'm more inspired to live and appreciate my best life than ever, as mentioned by amazing speaker.
@Ron-zu1sk
@Ron-zu1sk 4 жыл бұрын
Preach...When was your diagnosis?
@joannbarthold3032
@joannbarthold3032 4 жыл бұрын
Please watch Dr Wahls ted talk. Changing her diet to the necessary foods and nutrients she needed made all the difference. You have to see her testimony. I sincerely wish you all the best
@joannbarthold3032
@joannbarthold3032 4 жыл бұрын
Dawn Girl, that’s fantastic I’m so happy for you!! That’s my hope for anyone battling a physical condition to make food and exercise modifications not just accept a fate of health decline.
@michelletodd4893
@michelletodd4893 3 жыл бұрын
I completely understand. I am the same way. Sometimes these video's do a disservice and people think, it's easy and so you get tired (no fatigue is not tired, i shut down around 5pm each day and sleep for 2 hours. I can't fight it and it doesn't matter where I am). So your feet and/or hands tingle a little. (No they tingle a lot and feeling like fire ice picks are in there 24/7). So you walk with a cane (no I should be in a wheelchair, but refuse). Also we have swallowing problems, losing control of our tongue and this leads to speech problems). So you are a little forgetful. We all are (No we have cognotive deficiencies and even though you have picked up your daughter at the bus stop at 2pm everyday for 6 years, now you have 3 alarms to remind you. Plus your husband calls. Your husband says get eggs bacon and milk. Also bread. You just remember bread.) You live average life span No.most I know pass young with heart disease or respitory problems because our muscles weaken over time.). Yes you can live a happy life, but it's work, everyday is a struggle for some of us. I am 50 and in worse condition than my 72 year-old mom.
@thedikshantdethe
@thedikshantdethe 3 жыл бұрын
Please tell me process of treatment my son is also suffering from this desease from last 4years he is under treatment but not cure the profile picture is of my son please help us
@mikalookysmakeup
@mikalookysmakeup 3 жыл бұрын
“and you still did this to me” i’m crying... acceptance is one of the hardest parts of any illness. she’s amazing for talking about this.
@tatianadelarosa2251
@tatianadelarosa2251 3 жыл бұрын
Me too 😭😭
@juliamckay5032
@juliamckay5032 Жыл бұрын
It took a long time before I stopped feeling like my body was betraying me and begin to treat it as a precious friend in my journey to live well with MS.
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
I’m in the anger stage right now, it’s pretty intense, but I know it will pass
@luisguerra1975
@luisguerra1975 8 ай бұрын
@@down-to-earth-mystery-school yes it will. don't give up. Many of us have gone through it and you will get through it too...
@alexr6690
@alexr6690 Жыл бұрын
I was diagnosed with multiple sclerosis in 2018. I was 21 years old and in that year I had lost a family member and went through my first heart break. For the past 3 and a half years I have been a Latin dancer which has been a passion for a long time. I have performed and competed on stage for the past 2 years. Last year I tied for second place for my salsa pro/am freestyle. I also won my bachata pro/am freestyle!
@ericajollymackenzie2382
@ericajollymackenzie2382 Жыл бұрын
Her opening minutes was the last three years of my life, i'm trying to be ok with this.
@JKforUA
@JKforUA Жыл бұрын
I was dxed in 2000 (the Friday before my spring break. Yeah 🤦). There were 3 drugs for MS at that time. I go to a neurologist now who is a world renowned specialist in MS (his mother had it bad, and so he made it his passion). Last time I saw him, he said there are now 30 something treatments for MS, with more on the way. He also said that within my lifetime I will see treatments that reverse the damage. Then the next time I saw him, he said, "remember how I told you you'd see this within your lifetime? Now it's more within a decade". So this isn't a life ending disease. Help is on the way.
@jazzlall3971
@jazzlall3971 Жыл бұрын
This made me cry. I can see how I really want help.
@luisguerra1975
@luisguerra1975 8 ай бұрын
YES! So looking forward to reversing the damage that MS has caused.
@tvkelly3
@tvkelly3 2 жыл бұрын
I think the toughest part of MS, for me, is not knowing what the future holds. And it makes me question everything from the past.
@SofiaRodriguez-my4iy
@SofiaRodriguez-my4iy 2 ай бұрын
One day at a time, it makes life more precious
@verafreebourn9152
@verafreebourn9152 2 жыл бұрын
I only had 19 years of young health. I was married at 18 and diagnosed at 6 months after marriage. Was told do not have children, just raising them will take a toll on you! I was young and stubborn enough to fight back. I m now 62 and still fighting with Ocrevus and the help of my family Thank you for the story of your experience.
@stephanastasiadis6214
@stephanastasiadis6214 2 жыл бұрын
Did you end up having kids ? ♥️
@reneethomas5548
@reneethomas5548 4 ай бұрын
I've had MS since 14. I am 58. I have been on so many trial drugs, Ocrevus was the last. My neurologist now, my 25 year doctor got Alzheimer's, told me that I had been on enough drugs( so many side effects) and he would prescribe no more. He feels my MS will stay on a slow progressive course.
@MP-up8zl
@MP-up8zl 4 жыл бұрын
Newly diagnosed and this is exactly what I needed to see.
@rachelskultety9041
@rachelskultety9041 4 жыл бұрын
Same here, you are not alone 🧡
@guillermotorresbravo4948
@guillermotorresbravo4948 4 жыл бұрын
Not alone!! I am 34 and I'm suffering this disease since I was 3. I know everything about MS, so, if you have doubts or something I can help, please write me.
@danieldiaz4404
@danieldiaz4404 4 жыл бұрын
Same here , I got diagnosed in April 2020
@michaeldixon1982
@michaeldixon1982 4 жыл бұрын
Guillermo Torres Bravo I think I have ms
@sajanshrestha3542
@sajanshrestha3542 4 жыл бұрын
Guillermo Torres Bravo what age did you start ms treatment?
@ishikagupta8920
@ishikagupta8920 3 жыл бұрын
So glad I found this talk. Diagnosed with MS last year. I am 28 now, a CA finalist, it still kills me to think that i m not able to walk properly. My condition is progressive in nature though I have not given up. I am positive each day n believe me it is no easy. But i m not giving up.
@JTRipper
@JTRipper 3 жыл бұрын
I know some tips to halt the progression. Let's talk.
@Snappyworld24
@Snappyworld24 3 жыл бұрын
Just be positive.....aap jitna positive rhogi es bimari se aap utni he ache trh fight kr logi...this is my personal experience....trust me...
@Lexillios
@Lexillios 2 жыл бұрын
I'm your age In feb i had optic neuritis and I'm still on steroid treatment. I did a blood test today that will determine if i have this or not and I'm very scared as i only have a father who's 79 years old. I hope I'll be physically able to have a normal job at least.
@babaipuspendu752
@babaipuspendu752 2 жыл бұрын
How are you are you Indian?
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@annecrestani9218
@annecrestani9218 Жыл бұрын
My 32 year old daughter was diagnosed with MS 2 weeks ago. We are still in shock and I feel completely devastated for her. However, we are trying to stay positive and optimistic but geez its really tough. Luckily we live in Australia and most of her medical care is covered through Medicare and her medications will also be covered under our country's PBS. I do really feel for our friends in the US who are not adequately covered through their private insurance - very unfair. We are trying to take each day at a time....but as her Mum, I can't help but be very worried about her future. Wishing you all the best of health and happiness.
@livingwithms
@livingwithms 6 күн бұрын
It's amazing to see people bring light to Multiple Sclerosis into the mainstream. Robin is amazing 🙌🏻
@Neginrafienia
@Neginrafienia 3 жыл бұрын
So touching. I cried my eyes out when you were talking about your pains. I recently got diagnosed with multiple sclerosis and i can say I'm going through a lot these days. Wishing everyone with multiple sclerosis a healthy and easy life.
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@juliamckay5032
@juliamckay5032 Жыл бұрын
back at 'cha. Hang in there. You will find your way.
@baileyemal7785
@baileyemal7785 4 жыл бұрын
I was diagnosed at 18, which was just 5 years ago. I find this talk very comforting to me. It reminds me that just because I have MS, it doesn't mean my life is over. Thank you so much for your inspiring words ❤
@sarahplain6287
@sarahplain6287 4 жыл бұрын
Special hug x My aunt had it for 5years, until she apply herbal remedy for her cure Indeed herbal medicine is the best
@laurapoling5539
@laurapoling5539 3 жыл бұрын
@@sarahplain6287 What herbs did she use?
@sarahplain6287
@sarahplain6287 3 жыл бұрын
@@laurapoling5539 herbal remedy from Dr hadi
@sarahplain6287
@sarahplain6287 3 жыл бұрын
@@laurapoling5539 Moringa herbs
@taittinger1092
@taittinger1092 2 жыл бұрын
Bailey, I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@Buzzan1804
@Buzzan1804 10 ай бұрын
I'm form Poland. I was diagnosed 10 months ago - at the age of 37. It was the worst moment of my life. I had very similar symptoms to Robin. I have translated and read hundreds of studies on multiple sclerosis. I took hundreds of notes from which I drew a lot of conclusions. The disease has not damaged a single neuron in me for almost a year. And the inflammation decreased to almost zero. What helped me the most: 1) reducing saturated fatty acids in the diet to below 20 grams a day - many of the symptoms were significantly reduced 2) taking anti-inflammatory herbs - such as yarrow, sage, hydrangea root and cistus - I stopped all infections and inflammation 3) diet supporting the intestinal microbiome - at least 30 different plants a week 4) taking short-chain fatty acids such as sodium butyrate or proprionic acid, which "calm down" the immune system If someone cannot afford treatment or does not tolerate medications, I recommend trying it. It won't hurt, but it may help a lot.
@adamsz.972
@adamsz.972 9 ай бұрын
Czy możesz uszczegółowić jeszcze bardziej swoje wniosku na bazie wykonanej pracy i doświadczenia ??
@Buzzan1804
@Buzzan1804 9 ай бұрын
​@@adamsz.972 Najważniejsze odkrycie - dieta Swanka - główne założenie diety to ograniczenie do max. 20 g. tłuszczów nasyconych w diecie / dziennie. A najlepiej max. 15 gram. Nasycone tłuszcze - najpewniej poprzez wadliwy mikrobiom jelitowy u osób z SM - zmieniane są na SLCFA - nasycone długołańcuchowe kwasy tłuszczowe, które zmieniają profil cytokin gospodarza na prozapalny (Th1 / Th17). Dzięki czemu każda najmniejsza infekcja powoduje mocny stan zapalny i burzę cytokin, które mogą przebić barierę krew-mózg i zacząć atakować tkankę nerwową. Dieta Swanka ogranicza tłuszcze nasycone, dzięki czemu nie daje się "paliwa" stanom zapalnym. Do tego warto dietę oprzeć głównie na warzywach i owocach - minimum 30 różnych roślinach w ciągu tygodnia, aby zapewnić mikrobiocie odpowiednią różnorodność i sprzyjać gatunkom bakterii, które redukują stany zapalne. Warto dodać także minimum 5 mg OMEGA-3 (EPA + DHA) dziennie, olej lniany i witaminę D z magnezem oraz wapniem. Warto dodać do diety wyższe dawki krótkołańcuchowych kwasów tłuszczowych (SCFA) - np. maślan sodu (2 gramy / dziennie) i / lub kwas proprionowy (1 gram dziennie). Mają one szanse załagodzić stany zapalne, przywrócić przeciwzapalny profil cytokin i uszczelnić jelito - dzięki czemu nie pobudza się układu odpornościowego przedostawaniem się lipopolisacharydów (LPS) do krwiobiegu. Warto regularnie sięgać po zioła przeciwzapalne. Numerem jeden jest dla mnie krwawnik - wg pewnych badań obejmujących 75 osób i trwających 1 rok istotnie zatrzymał on tlący się stan zapalnych w układzie nerwowym uczestników i zmniejszył o 2 pkt. niepełnosprawność. Stosowano 500 ml wodnego ekstraktu z krwawnika. Warto też pochylić się nad korzeniem hortensji - zawiera składniki, które zmniejszają ilość patologicznych limfocytów Th17 - które to głównie odpowiedzialne są za zniszczenia w rzucie SM. Warto zwrócić uwagę na lek przeciwhistaminowy o nazwie Clemastinum (klemastyna). Uczestnicy ze zmianami demielinizacyjnymi przez 3 miesiące zażywali 2 x 5 mg klemastyny. Zanotowano u nich przyspieszenie przepływu impulsów nerwowych o 1,7 ms + oznaki procesów odbudowy osłonek mielinowych.
@debradunbar6160
@debradunbar6160 Жыл бұрын
Was so proud I made it to 30 minutes on the elliptical … then the next day at 30 minutes my legs collapsed and three men had to help me up. Of course I cried out of embarrassment but I should have laughed. I did 30 minutes two days in a row. The elliptical is a replacement for not being able to walk without a limp. It’s a godsend.
@citizenk8125
@citizenk8125 4 жыл бұрын
Very inspiring, so added it to my fav's... I, was diagnosed with RRMS 15 years ago I'm now 45 and at the age of 30 I felt my whole world come crashing down but just like Robin, I had to accept my fate & what was now my new norm & granted "it's been tough" but I've "changed my attitude" towards so many things & kept the faith alive, and I keep on going through all adversity... Coz once you're defeated mentally, you're defeated spiritually & ultimately physically even without the aid of "chronic illness!" So I say that to say this... Be strong all my newly diagnosed MS warriors & stay positive in your mindset & don't allow the challenges you face define you it's not the end; far from it. And to my veteran MS warriors, keep on keeping on... God Bless you all peeps... Love & light!!!!
@joannbarthold3032
@joannbarthold3032 4 жыл бұрын
Dr Wahls ted talk is amazing on MS
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@fatalradius
@fatalradius Жыл бұрын
Great talk! I am 38 and have had RRMS since I was 21, but officially diagnosed at 27. It’s a roller coaster ride and still is. I was on Tecfidera from the start, and currently taking Vumerity. I also may be switching over to one of the newer infusion drugs in the near future. I am blessed to still be athletic, but there are times I have my days where I am weak and my brain fog creeps up. If you are newly diagnosed, do NOT ignore treatment. It’s one of those illnesses where you need to incorporate western medicine, along with a good diet and exercise. Those three go hand in hand, and if you follow up with them, you will be fine 😊. I am confident that within the next 10 years we’ll have better medicine to slow it down more or even halt it. I hope scientists find a DMT that only nukes problematic B cells instead of all of our B cells 😅
@hawaiihaha09
@hawaiihaha09 4 жыл бұрын
Great presentation. I found out I had MS at 51. I asked not Why Me but rather Why Now. Weren’t we supposed to retire and have it easier? Instead of starting out on a new battle at 51. Then I flipped to gratitude. I Had Had 51 healthy years with career, travel, family etc. Thank you for explaining the battle and the mental strength needed to stay strong.
@kasiowelove1
@kasiowelove1 4 жыл бұрын
My Mum was diagnosed last year at the age of 52. Thank you for this attitude, it inspires!
@jamesr.g.2320
@jamesr.g.2320 4 жыл бұрын
You’ve lived 51 years of your life.
@rebeccahenly4592
@rebeccahenly4592 4 жыл бұрын
I too was diagnosed at 51! Looking back I had had the stress of the loss of my mother, a divorce and all that goes with it, and hormone changes. I also am so grateful to have been an active person raising 2 children and having a tremendous career as a physical therapist. It’s not always easy but I try to see the good and am thankful for love and life.
@hr9278
@hr9278 3 жыл бұрын
You are Lucky. I had it at 18 years old and i had To build my life and my career with it.
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@artizen9466
@artizen9466 3 жыл бұрын
I was diagnosed with MS when i was 12 years old. Im 22 soon 23. And my first symptom was central vision blindness. I was very young and my third attack was very scary. It took everything away from me. MS made me sacrifice things I didn’t want to from making friends, talking walking or feeling like a normal human. It caused Bipolar disorder and because of its immune system killing itself ms caused other diseases too. To this day, im suffering but im glad i can see again.
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@stevewilliams4842
@stevewilliams4842 2 жыл бұрын
So sorry to hear that..how are you doing now?
@கசடதபற-ற5ல
@கசடதபற-ற5ல Жыл бұрын
Try avoiding inflammatory foods. Do a food allergy check and stop eating foods that cause you inflammation. And pray well. God is a healer.
@kibrahymi
@kibrahymi Жыл бұрын
I got it when I was 17 and I was sad at first but then Allah guided me.
@icysaiden5337
@icysaiden5337 Жыл бұрын
I have MS since 2021. I'm a Filipino living in the Philippines where healthcare is far from the US. My neurologist is not covered by my insurance as well as my tests and treatments. I just hope that someday our healthcare will improve. I cry a lot thinking about my future and my family don't understand this disease. They only see it as if I only have a flu or I'm just stressed out. I'm young and I want to have my own family someday but I don't want to be a burden to my future child and husband. I want to keep my balance, I want to keep my ability to walk to continue climbing mountains. Oh how I hate this disease. Thank you for this inspiring video. I will do my best to live my best life. God bless you all.
@luc9677
@luc9677 Жыл бұрын
Hey hey hope you're doing well! I can't relate to MS, but had chronic disease myself. What our current medicine systems tends to oversea about chronic disease is that unlike what they are suggesting that the body attacks itself, is that most underlying cause of chronic disease is an parasatic infection either in case of worms, bacteria, viruses. Science itself estimates there to be around 300000 different parasitic infections that the human body can have, meanwhile they are only testing for around 30 -50 variety of species. So this is largely overlooked in our society. These infections can release toxins in the body to which the body reacts and thus the name autoimmune starts to pop up. To boost your immune and combat infections defenitely recommend: cellery juice, vegan, glutenfree diet, no processed food, no sugar. Also sprouted lentils and beans could be a great addition to build back good bacteria ! I have had IBS syndrome and intense emotions/cravings aswell as constant teeth grinding and trembling of the jaw and by following this diet i have been able to greatly reduce my symptoms to the point they feel non existent. Still following the diet to give my body enough time to build back stronger. For additional information on the healing process and importance of diet: Check out: medical medium gutfeelers livingdiseasefree ( she suffered from MS herself, but cured it as the underlaying cause was parasitic) Much love, peace and many blessing on your healing journey💛✌🙏
@timmywow89
@timmywow89 3 жыл бұрын
i hurt so many people with my attude and mood swings i didnt understand that ms was making me be someone that was very unlikable, but i recognize it now and know how to handle my self better by resting properly exercising and eating healthy foods
@cappuccinogirl00
@cappuccinogirl00 3 жыл бұрын
I recently started working in neurology department, and meeting patients with MS made me realize how much I should appreciate life and everyday blessings like being able to run. Big respect for all you guys, and never give up on yourself! Keep fighting this battle and enjoy as much as you can, because I promise, you aren't alone on this journey. ❤️
@CarolCreates
@CarolCreates 2 жыл бұрын
Hey 👋🏾 I tell people this every time I’m asked what’s wrong (as I use a stick). I tell them they have their health and not to take it for granted 😊
@Stayinthelight87
@Stayinthelight87 3 жыл бұрын
I got diagnosed with MS 1 week ago. I'm 31 with 2 young boys, thank you I needed it.
@cicislife1147
@cicislife1147 3 жыл бұрын
I have MS too! Follow my journey ! You got this!
@robinbrockelsby549
@robinbrockelsby549 3 жыл бұрын
Exercise, eat healthy, and embrace each second with your littles😊.
@Okie343
@Okie343 3 жыл бұрын
You need a methylmalonic acid test to see if your tissue level B12 is low. A regular B12 blood test won't show the tissue level, you need the M acid test. When this acid becomes elevated due to low tissue level B12, it dissolves the myelin sheaths from the nerves and is often misdiagnosed as MS. You might have a genetic defect where you can't absorb B12 and will need monthly injections. Once the B12 is restored to normal levels the body will repair most of the myelin sheaths within 2 years. Good luck
@scottishlad1990
@scottishlad1990 Жыл бұрын
Am the same man 33 yo two young boys and getting diagnosed now
@jstephens2818
@jstephens2818 Жыл бұрын
Truly amazing! My wife was diagnosed in 2009.Thank you for sharing your story!
@stevenharvey2941
@stevenharvey2941 2 жыл бұрын
you are my hero. I have watched this over 40 times. f ms. you go girl. all power to you.
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@JG-td3qw
@JG-td3qw 3 жыл бұрын
With or without MS, we do not know when we will die. It’s best to live life and appreciate living every single day.
@amandaolivier1351
@amandaolivier1351 2 жыл бұрын
I was diagnosed Jan 2021, with RRMS, EDSS 1. By September 2021 I declined to EDSS 3.5. I thought my world was over.. I had numbness in my hands, legs, nausea 24/7, bouts of dizziness, the MS Hug, lower back pain, couldn't make it past a bathroom and the list goes on. I was fortunate that my mobility wasn't impacted. I found out about HSCT and went in October 2021 in Monterrey, Mexico to get it.. unfortunately, this treatment is still stuck in clinical trials phase 3 in the states. It has an estimated ~85% chance to halt RRMS. My last MRIs showed no new activity! I work 40+ hours a week and I only take vitamin D once weekly. I have enough energy to cook dinner when I get home, too! I wish this was offered as a frontline treatment for everyone with MS.... I am forever grateful for my second chance at life. Best wishes to everyone battling this horrific disease.
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
Thank you for sharing, I live in Mexico and will check it out
@stephanieboddy6341
@stephanieboddy6341 4 жыл бұрын
I'm 29 years old and have been living with MS since I was 23. I've been struggling more so recently because I'm wanting to start a family and I'm worried about starting medication. We are in no position to start a family at the moment and I'm worried about going on a medication to have to get off of it in a year or so. I've also been extremely scared about my health. I haven't had an episode since my first diagnosis but I feel like a ticking time bomb. Sorry for the rant, I just wanted to say you are a huge inspiration to me. Your positivity is exactly what I needed. Thank you so much for doing this TedTalk.
@yontabir172
@yontabir172 3 жыл бұрын
You can live a Healthy and Successful life. Go Strong
@myown2101
@myown2101 3 жыл бұрын
Meds don't work. The only way to success is nutritional therapy and lifestyle change. Good luck on your journey!
@lindalear5000
@lindalear5000 3 жыл бұрын
Please PLEASE I hope that you see this reply. Look up Dr Aaron Boster, Boster Center in Columbus, Ohio. Look at his UTube videos! I have this disease 10 yrs in, You need an aggressive informed, passionate doctor advocate along with you on this journey. See all his videos. L
@myown2101
@myown2101 3 жыл бұрын
@@chris1960 There is absolutely no data that shows the MS drugs slow down the progression of the disease or improve the quality of life. I base my opinion on research data that I have access to, not conspiracy theories.
@myown2101
@myown2101 3 жыл бұрын
@@chris1960 We should find a way to spread this information among people! The enlightened ones will join us! And the rest.... Well...I am afraid we will have to push them of the edge of the planet.
@leigh5745
@leigh5745 3 жыл бұрын
I am 46 and currently amid testing to see if my issues are MS. Love this talk as tears run down my face. 💚
@shanbee._
@shanbee._ 4 жыл бұрын
I may have MS. My neurologist appointment is tomorrow, and I'm nervous but ready for whatever comes my way. This TED talk made me cry however because I had been "woe is me". But whatever is going on with me isn't a losing battle, just a new way of living life for me. I don't know what the diagnosis will be. Could be temporary and curable. Could be life long. But whateve it is, I'm ready to fight for myself.
@shanbee._
@shanbee._ 4 жыл бұрын
@Robin Brockelsby Thank you so much! Your words here and on this Ted Talk have given me so much hope and courage!!
@ketamukhraneli9268
@ketamukhraneli9268 4 жыл бұрын
i just read this comment. how are you?
@chinwendutony3326
@chinwendutony3326 4 жыл бұрын
@Shan Bee how are you today ?
@shanbee._
@shanbee._ 4 жыл бұрын
@@ketamukhraneli9268 Hey, thanks for asking! it's not MS according to my Brain MRI. But I'm still dealing with all the symptoms. Seeing a new neuro in Feb that specailizes in many different neuro and movement conditions.
@shanbee._
@shanbee._ 4 жыл бұрын
@@chinwendutony3326 Hey, thanks for asking! it's not MS according to my Brain MRI. But I'm still dealing with all the symptoms. Seeing a new neuro in Feb that specailizes in many different neuro and movement conditions.
@Amaan001
@Amaan001 3 жыл бұрын
Im diagnosed in 2019 and ALHUMDOULILLAH proudly fighting
@hanaalmansori2333
@hanaalmansori2333 3 жыл бұрын
Me 2 i was diagnosed in 2019 inshaallh you will be able to win it 😊🤲
@Amaan001
@Amaan001 3 жыл бұрын
@@hanaalmansori2333 AMEEN!!
@suave605
@suave605 3 жыл бұрын
@@Amaan001 fight it off man! Believe in Allah, he did not give MS to you without a reason, he gave it to you so he can test you on how you will handle the situation. Fight it off!!
@suave605
@suave605 3 жыл бұрын
@@hanaalmansori2333 ^
@srushtosman5580
@srushtosman5580 3 жыл бұрын
Me 2 same year , How do u fight????
@heatherbuszka9208
@heatherbuszka9208 10 ай бұрын
You 14:28 r Amazing!! I am 47 years old and I was diagnosed with M.S. in 2010 relapse remitting. It was a complete Surprise for me when I was diagnosed, being that from the age of 2 I was a gymnast, and from 2nd grade all the way through high-school I cheered the I became a competition coach for both. I try to remain positive, but it's hard. M.S. is incredibly painful. Thank you for sharing your story. Stay Strong, Heather Buszka 14:28
@mictaylor88
@mictaylor88 4 жыл бұрын
I was diagnosed in 2016, but my symptoms started in 2013. It takes so long just to get a diagnosis. It started with my left thigh going numb while walking and running. Then i woke up one morning and could not see good. I just wanted a reason for this it took so long. My vision got better with treatments my thigh isn't numb anymore. you wake up every morning and dont know what your condition is going to be like today. Heat and stress is my major things that bring on my attacks. When i was first diagnosed i was grateful for the answer and wanted treatment. The doctor was so surprised i turn down the narcotics. I have a family and ms hasnt slowed me down. I make myself get up some mornings, but i think my health could be worse. I am not dying and if you watch what brings on your attacks and take care of yourself you can live normal and just as long. it just depends on the type you have and if you are health conscious. When people find out i have it its like "oh im so sorry". Thats why i dont tell many people I say dont feel sorry for me it could be worse. My doctor does research and im on a clinical trial they watch my health really closely and so far no attacks in over 2 years. I couldnt walk the drunk test before I started now i can i was having the balance issues now i dont that was so embarrassing i would always make sure i had a shopping cart to hang on too. The spinal taps arent fun but i have done them with no calm down meds. Im in this trial because i want to make a difference I want to help people like me and future generations. i just dont get in the heat and am very aware of stress. Dont think its the end of the world and never give up.
@leylacake5110
@leylacake5110 4 жыл бұрын
You are amazing. I’m going to pray for your continued life with no flares and only happy times going forward! You aren’t alone, I appreciate what you are doing - you deserve the world and more, keep pushing ❤️❤️❤️
@mothegoddess5239
@mothegoddess5239 3 жыл бұрын
Thanks, I needed to hear this. I was diagnosed 2 weeks ago.
@88Ecliptica
@88Ecliptica 3 жыл бұрын
I hope your trial continues going well for you. I hope you don't mind me asking but what is the name of the clinical trial you are currently partaking in?
@tinahatcher5186
@tinahatcher5186 3 жыл бұрын
was just diagnosed and trying to choose a treatment. If you do t nine me asking what is the name of your treatment ? I'm just at beginning stages and have a feeling of not feeling grounded and pins needles..and sometimes a sensations of a feather like tickle brushing across me. Please. advise.
@Charly_Dont_Surf
@Charly_Dont_Surf Ай бұрын
My grandfather lived to the age of 93 with MS, it gives me hope as I was diagnosed 4 years ago. He led a fruitful life.
@Terricharmedackles
@Terricharmedackles 2 жыл бұрын
I am in the process of getting an MS diagnosis. I’m so lucky to be in the UK where treatment is free. I feel for people who have to stop at medical bills.
@grenstickyflap
@grenstickyflap 2 жыл бұрын
I have been diagnosed for 10 years this year, we are lucky that we have the NHS. I really believe that a positive state of mind is half the battle. I wish you all the best with it.
@nooralfajr1775
@nooralfajr1775 Жыл бұрын
The problem is not how and who pays the bills . The problem is medicines are useless and no cure anyone gets. A small note, all ms patients who are on wheelchairs are taking medicine.
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
I am a U.S. citizen and I’ve had to save up for six months to afford the initial MRI which isn’t covered by insurance. And, it’s been five months since I applied for disability benefits, still waiting to hear!
@ms.and_me
@ms.and_me 2 жыл бұрын
Loved it, and great that MS is getting more visibility. But even when people are giving visibility to MS I feel left out. I have Primary Progressive MS. It has nothing invisible to the world, but I do feel invisible in the MS community. Would appreciate that even in a great personal experience exposition like this it would be mentioned that other more aggressive forms of MS exist.
@vanshthakur6980
@vanshthakur6980 2 жыл бұрын
I'll pray for your health
@priyangaraju7827
@priyangaraju7827 2 жыл бұрын
This video is a Good vibes. I’m with this MS since 2 years now ,completely imbalance total collapse.the best thing that happened is I delivered a boy baby .with this multiple sclerosis I was so worried but finally I got pregnant and now healthy baby is delivered.this is my victory against this multiple sclerosis .thank god thank u so much for the love you shower on me
@babaipuspendu752
@babaipuspendu752 2 жыл бұрын
Hey..how are you now u need help.. please reply
@RahulRaj-up5ql
@RahulRaj-up5ql Жыл бұрын
What help
@iannapier9107
@iannapier9107 4 ай бұрын
She is really inspiring! I was diagnosed in 2020 and at that point i couldn't walk and I had double vision. I was told I had several lesions on my brain and spine and I have relapsing M.S. I was devastated and it felt like a death sentence! Thankfully I found a way out of it by doing yoga, improving my diet, meditation and drinking plenty of water! Yoga has helped so much as it focuses a lot on balance and there's a lot of spinal flextion
@levasquez4025
@levasquez4025 3 жыл бұрын
Thank you for leaving MS sufferers with the hope that longevity is not as bad as told. The harder part of MS is that people appear fine when they are actually internally suffering. for this reason they are dismissed and ignored and even blamed for the illness. Changing eating habits is a major contributor to coping better with MS. People this can change your life: consume raw green leafy produce, avoid sugar, starches and meats at all cost; drink lots of water and move, breath, pray or meditate, these new ways are life-changing but worth the effort. To your health!
@brooke9885
@brooke9885 2 жыл бұрын
I don't have MS but chronic asthma and it has turned my world upside down this video was definitely the encouragement I needed ❤️
@skystar6526
@skystar6526 2 жыл бұрын
I was diagnosed MS 1 month ago, that was very hard to me to know my diagnosis 😖 but any way I’m thankful to Lord it’s not tumor , I had almost all symptoms with has brain tumor , have double vision , dizziness , namens , my memory is changed and it makes me cry all the time, a lot of stress make it worse , I’m 51 years old and already feel like I never gonna be the same , trying to listen positive videos of people with the same diagnosis, with makes me lil bit positive , thx for shearing your experience sweetie ♥️🙏
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
I am also 51 and pursuing a diagnosis, had a really challenging emotional day and then I came across this video. I am committed to feeling all the feels and doing everything I can to be healthy as possible, for as long as possible. Hang in there my friend, you are not alone!
@casillas2298
@casillas2298 4 жыл бұрын
I got diagnosed 2 weeks after my 20th birthday. It’s been 2 years and I’m still grieving every day.
@Leo__4
@Leo__4 4 жыл бұрын
Wanna talk about it? PWMS here too
@karlaschmid5676
@karlaschmid5676 3 жыл бұрын
🙏 praying for you❤️
@natalyaryzh4008
@natalyaryzh4008 3 жыл бұрын
I got diagnosed when I was 18, 10 years ago) And I keep going, I'm still in good condition (EDSS = 1.0). Everything is going to be great, live your life and feel positive!
@lololola1835
@lololola1835 3 жыл бұрын
SAME!
@trendsintheends7615
@trendsintheends7615 3 жыл бұрын
Anyone have the fear of other people watching you limp and so you walk even worse? 😔
@cherrellmiller5552
@cherrellmiller5552 4 жыл бұрын
When you said sinus infection I immediately started balling. I’ve suspected I’ve had ms for a year now and can’t get anyone to listen to me. I had sinus infection after sinus infection and they kept saying I had vertigo but I knew more of my body was having excruciating symptoms. I’ve recently gone to a spine doctor for pain who put me in physical therapy which I am doing now. Still on the journey to diagnosis but that spine doctor was the first person who listened to me.
@Malcolm0071
@Malcolm0071 4 жыл бұрын
Try and get an MRI ASAP :-)
@pennylanekane
@pennylanekane 2 жыл бұрын
Same! My friend said she had no diagnosis until lumbar spinal puncture. She read my posts on FB and knew immediately to contact me. I started getting sick 10 years ago. Chronic vertigo, numbness, muscle spasms, twitching of the face and tongue, migraines, sensitivity on the skin, burning sensations, muscle weakness, heavy limbs, difficulty swallowing, memory loss, I could honestly keep going. I have an appointment for my MRI results on Thursday
@stevewilliams4842
@stevewilliams4842 2 жыл бұрын
@@pennylanekane how was it?hope you're okay
@lucieriopel1642
@lucieriopel1642 Ай бұрын
Someone very dear to me was diagnosed today.😢Your talk really helped me understand the disease and guide me as what to say and not say. You are a very strong and inspiring person. Thank you so much! ❤
@j.m.p8051
@j.m.p8051 4 жыл бұрын
A huge embarrassment is doing a side step while walking. The tag line is true, "we're not drunk, we have MS" applies. I have had to say that a few times in the last 20 years!
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@becbrown212
@becbrown212 3 жыл бұрын
Everyone's MS journey is different. You can't look at other people's experience and make assumptions about your own health. Best wishes for everyone who has a MS diagnosis. Keep healthy and keep fighting. I am so lucky to live in Australia where my medications are free. Every day we show up we are winning.
@ClassicRanger60
@ClassicRanger60 2 жыл бұрын
Loved your attitude towards MS, having MS myself for over 23 years has caused me to appreciate life more than ever . We all have ups and downs, but bouncing back and realizing this life is short helps to maintain a positive attitude on what is out there for us to embrace. GOD bless you and hope to see more of what you have to say.
@naenersable
@naenersable 2 жыл бұрын
I was diagnosed with RRMS in 1997 and then SPMS in 2018 I have been bedridden since 2020 and I don't know what to do but I'm grateful and optimistic every single day "NOW".
@Dearchay
@Dearchay 4 жыл бұрын
I am so grateful that my insurance covered all of my medicine and tests through this journey. I realize that I've never let myself mourn over this diagnosis. I spent the whole summer of 2020 undergoing tests while battling relapses. This wasn't the diagnosis I wanted but this video brought me closer to peace. I feel better knowing that we're all battling together and that we got this.
@zedmezal5897
@zedmezal5897 4 жыл бұрын
thuhyan we got this ✌️☺️
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@musicgirlsoccergirl
@musicgirlsoccergirl 4 жыл бұрын
I was diagnosed 2 days ago, randomly don’t have any of the symptoms but my MRI confirmed it, this really helped me as I go through how the rest of my life could be.....just turned 23 never thought I would be where I am with this diagnoses
@Lala-qj6we
@Lala-qj6we Жыл бұрын
❤❤❤
@teppsr
@teppsr 4 жыл бұрын
I’m so glad I made it here. This disease is so unpredictable . When I’m not experiencing symptoms really I feel hopefully, then when they occur I think is this it? Is this where I’m going to lose my ability to move my arm completely? So much uncertainty BUT this speech was so empowering. KEEP FIGHTING!
@SaraC-us5ky
@SaraC-us5ky 2 жыл бұрын
Got diagnosed in 2009… I was 22. 13 years after I have 30+ lesions just in my brain, and had 5 time ON, twice bilaterally. I’ve had three kids and had to start Tysabri, even if JCV+. I hope I’ll be able to do stem cell transplant one day, when I’ll have the money. Hopefully they will find a real cure for us all.
@jasminejade4679
@jasminejade4679 3 жыл бұрын
My dad has MS and I’m here searching for anything to be able to help him 🥺 I love him so much and I’m afraid he’s giving up on himself and it’s devastating ! I hope I can get better knowledge and insight so I can try and help my dad 🥺 if any one has any advise or things that help them in their everyday life please share with me , thank you so much and I’m sending healing light and energy to each and everyone reading this !
@katelynmatthieu
@katelynmatthieu 3 жыл бұрын
Same here!! My dad got diagnosed about 2 years ago.. message me if you need someone to talk to😊
@leilasuki162
@leilasuki162 3 жыл бұрын
Look into Overcoming Multiple Sclerosis! Dr. George Jelinek's program. They have a facebook page.
@Okie343
@Okie343 3 жыл бұрын
Your dad needs to have a methylmalonic acid test, which will show his tissue level B12. When B12 gets low at the tissue level it causes this acid to elevate and it eats the myelin sheaths from the nerves. A normal B12 blood test won't show the tissue level, you need the methylmalonic acid test. Once the B12 is restored to normal, the body will heal the damaged myelin sheaths in around 2 years.
@jaso9204
@jaso9204 Жыл бұрын
I have PPMS my main symptom is drop foot. so hard to walk but I fight for my happiness
@raminazzal9563
@raminazzal9563 2 жыл бұрын
Dearest Robin. I was diagnosed with PPMS IN 1985. Now Im in a wheelchair. Yourwords were sadly like having a conversatin with myself. MRI Lumbar puncture Spasticity MRI, I can relate to all. I would absoutely be honored to talk to you if yoiu can spare the time in your busy schedule. Thank you and God Bles you, us and all the needy.
@thedoomofjasmine982
@thedoomofjasmine982 4 жыл бұрын
I am newly diagnosed and this is so inspirational. Thank you!
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@kalikso
@kalikso 2 жыл бұрын
Just got diagnosed and I want to say thank you for the honesty
@__Wanderer
@__Wanderer 2 жыл бұрын
Diagnosed 3 months ago. Feels like my prior self has died. I am still grieving the loss of who I was an am fearful of my future. I am still young and already blind in one eye. This disease is horrific.
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
You are loved and not alone💜
@flynfresh3166
@flynfresh3166 2 жыл бұрын
my brother was diagnosed during covid, he lost his job, his fiance left him. I want to help him get back on his feet and be there.
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
I’m so sorry for his loss, but he deserves a loving and supportive partner. It makes all the difference!
@successlifeskillsservices2544
@successlifeskillsservices2544 6 ай бұрын
🙏🏽
@jasonmordecai8212
@jasonmordecai8212 4 жыл бұрын
As a photographer who has traveled the globe who got diagnosed earlier this year I won’t let it defeat me. I’m already going through HSCT and will continue to stay positive thanks to this talk I needed it. Thank you
@xxxminimoonxxx3756
@xxxminimoonxxx3756 3 жыл бұрын
I gave ppms or spms any way since dx in 2015 getting disability in my right side of the body most but i feel not human i cant even control my toilet needs and i am the most positive person but this ms really hot me and will try with go find me ti collect enough money to do HSCT maybe Mexico how is ur going pls i need more info and positive outcomes 🤗tnx i hope this treatment get available fir everyone for free or less money at least
@denosinha4289
@denosinha4289 3 жыл бұрын
How did it go?
@jasonmordecai8212
@jasonmordecai8212 3 жыл бұрын
I only went through half of the HSCT and got my stem cells harvested and they can keep them safe for me for 5yrs. Having the chemotherapy and reducing my immune system to a very Low point I ended up not well so I called it off to recover fully. I’m now on Kesimpta which is a DMT that has made my life a million times better
@denosinha4289
@denosinha4289 3 жыл бұрын
@@jasonmordecai8212 some complication with myeloablative chemotherapy?
@jasonmordecai8212
@jasonmordecai8212 3 жыл бұрын
@@denosinha4289 no I reacted to the drugs in me and came out with a rash on my side. Everything went smoothly apart from that so if your thinking of getting it done there’s nothing better than that to start fresh again
@MistressKarma6969
@MistressKarma6969 2 жыл бұрын
Her story is mine😥😥 i was just diagnosed and iam bawling. Word for word she gas said everything i feel. Ty for your story. Sylvia from texas
@donaldwilson9260
@donaldwilson9260 2 жыл бұрын
very good to listen to her speak. My daughter was diagnosed with MS just recently so it is a big adjustment and coming to terms with things. AS with serious health conditions you do not have awareness or understand till things are closer to home.
@indiaportwood6094
@indiaportwood6094 2 жыл бұрын
I needed to hear this I was diagnosed March of this year. I’m a cosmetologist and love what I do but it’s hard, I force myself to be able to get up and service my clients. I have a lot of weakness in my left leg and pain in my neck and back. I will never give up on life this disease will not take over my body.
@RobinWanEye
@RobinWanEye 2 жыл бұрын
I was diagnosed this June and looking back I think my symptoms started 10 years ago. Working as an Esthetician, I remember getting dizzy and wobbly but having the table there to stabilize me. I chalked it up to dehydration because if I had a booked day I wouldn't drink a lot of water so I didn't have to leave my suite in the middle of a service to pee. There was the bladder issue showing up. 10 years ago.
@April-hz7et
@April-hz7et 4 жыл бұрын
i was 48 when i was dx 2010 i dont take anything for my ms i do have damage on my right side thats why i joined the ms fitness challenge gym on fb it has help me get stronger and I ALWAYS SAY NO MATTER WHAT IM GOING TO LIVE MY BEST LIFE . and I DONT WORRY ABOUT WHAT I CANT DO I THANK GOD FOR WHAT I CAN DO .love april
@sempressfi
@sempressfi 4 жыл бұрын
Lupus warrior/survive/thriver here and I am almost always able to pull myself out of the dark depression/struggles by reminding myself to: 1. Love my life more than I hate the pain; and 2. Do not let what I am unable to do interfere with what I CAN do. Sometimes, like in the midst of a severe flare, the silly, emotional side of my brain needs a little more convincing so I will think of things I am grateful for that make me super happy and content, which is coincidentally one of the only things I can do during the big flare that makes my skin crack from 16+ lbs of water weight in one day and my head feels like it's in the dog while riding a merry-go-round lol But yes, any and everything/any and everybody from my son to my fur kids to the smell of winter coming in or spring blooming and books set in medieval times goes on the list, or at least gets visualized in my head. 9 times out of 10 this at least brings me back to a more rational yet self compassionate mindset and oh my gods what a difference it makes! This turned out way longer than I thought it would be but hopefully it is helpful, even if its simply knowing all of us in the chronic illness world are all in this together, supporting and loving each other through it all! Sending so much love and some extra spoons!! 💜🧡 purple and orange - lupus and MS awareness colors 👑
@franccci
@franccci 4 жыл бұрын
YEEEEEES that is so true
@sempressfi
@sempressfi 4 жыл бұрын
Hahah just saw typo of head feels like it's I'm the dog 😂 meant "in the fog"
@CaroL-us9rd
@CaroL-us9rd 3 жыл бұрын
Im waiting for a diagnosis but the symptoms she said were the exact symptoms I had a few months ago. All on the same side and the same feelings. Im glad to see im not alone but wish no one would be affected by this. Im so so happy this ted talk exists.
@siamsa69
@siamsa69 3 жыл бұрын
I’m getting an MRI next week. My symptoms are mostly tingling in my hands and foot. Sometimes the side of my face and tip of my tongue. It started like three weeks ago, so not even a month and hasn’t really stopped. I don’t have any other symptoms but I’m really scared.
@CaroL-us9rd
@CaroL-us9rd 3 жыл бұрын
@@siamsa69 For my experience, Ive had my symptoms from July to September with a few "outbursts" in October and November. Now I dont have any symptoms left.
@jackieharris3759
@jackieharris3759 4 жыл бұрын
I also have MS I was diagnosed in 2008. I needed this. I have never taken meds for this disease. Life is very hard but I try my best to push through. Thank you for the reinforcement.
@Heatwave1976
@Heatwave1976 4 жыл бұрын
How may I ask are you finding your daily routine?
@Dideeeee
@Dideeeee 2 жыл бұрын
Do you feel not talking meds made it worse?
@petitemaam
@petitemaam Жыл бұрын
I was told that medicine is great and not to worry about being in a wheelchair. Tysabri has done wonders for me. I'm relatively normal, though I do get scared of PML more than my MS. I got 1 lumbar puncture. I get MRIs every year. I hate the expenses. Tysabri in reased their costs to almost 27k a treatment, not including the infusion center. With insurance it's over 8k. And I'm blessed to be able to use a financial assistance program for that 8k.
@shrxlay
@shrxlay 3 жыл бұрын
got diagnosed the past month and seeing this i feel I'm not alone
@robinbrockelsby549
@robinbrockelsby549 3 жыл бұрын
You are not alone 🧡💪
@shrxlay
@shrxlay 3 жыл бұрын
@@robinbrockelsby549 OMG hi! YOU'RE SO COOL AND STRONG
@stevewilliams4842
@stevewilliams4842 2 жыл бұрын
You're not alone
@albarbosa51
@albarbosa51 3 жыл бұрын
My doctor told me today about this Ted Talk with Robin I have MS and as she said it's really hard. One thing she said I did like I live one day at a time, and today I'm also feeling great!
@michelles8510
@michelles8510 3 жыл бұрын
My daughter had been diagnosed with autoimmune multiple sclerosis. She's been hospitalised for the 2nd time and today She had seizures and was taken to the ICU. They did MRI and ICU doctor said they found a blood clot on one of the vessels in the brain so now they going to do a CT scan to zoom to the exact place and start my girl on blood thinning medication. I am going through so much and can't stop my tears and I have been praying for her. I love my daughter very much!
@michelles8510
@michelles8510 3 жыл бұрын
@Lisa Sitzler she's home now and going through physiotherapy. The reports from USA came back in June and it was negative MS that's on my birthday the good news came. Thank you Jesus. Son of God full of miracles Amen 💪💖😊🙏🙌
@amyf108
@amyf108 4 жыл бұрын
Robin, I loved listening to your talk. I was dx with MS almost 21 years ago when I was 20. I have learned so much about life and my inner strength while living with MS. I totally agree that staying positive is important as well as exercise and nutrition! Thank you for sharing your story. 🧡
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@rlrbates
@rlrbates 4 жыл бұрын
I was diagnosed 1yr ago. It sucks that we have this. So thankful for you speaking, encouraging, and letting me know I'm not alone!!!
@DRKEVWE
@DRKEVWE 4 жыл бұрын
Super inspiring Robin. I'm a Medical Doctor but this is the most simplified presentation on MS I've ever heard and the most motivating I must say. Just amazing. Keep on with the good job.
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@theleadershipgardener
@theleadershipgardener 2 жыл бұрын
The not knowing is the worse part. It's so weird how calm you feel when they're able to decidedly tell you what you have. Truly hope you continue to battle and do well!
@robinbrockelsby549
@robinbrockelsby549 2 жыл бұрын
I’m continuing to do well with my disease management and optimistic attitude & approach toward living life. Hope you are doing well too 💕
@down-to-earth-mystery-school
@down-to-earth-mystery-school 11 ай бұрын
I appreciate your sharing because I’m going next week to get my MRI, it took me six months to save up since my insurance doesn’t cover it. So ready to just know already, or not, but likely positive based on my symptoms. I’m sure I will still have a lot of mixed up feelings, but at least I can begin treatment to halt more progression!
@michelleriches1511
@michelleriches1511 4 жыл бұрын
This was the most amazing 15 minutes for me and I thank you. You are me, I am you. I just sat on my front porch in the sunshine listening to you and cried for the entire time. This is my story and your words are eloquently and emotionally perfect. Thank you for sharing your story.
@robinbrockelsby549
@robinbrockelsby549 4 жыл бұрын
Thank you Michelle. Sending you hugs & strength💪. We are warriors
@jonathantodd2054
@jonathantodd2054 4 жыл бұрын
Very good talk. I have ms for almost a decade it was very aggressive but thanks to wonderful nhs and great neurologist got put on tysabri early doors and was out of wheelchair in 3 months and had very few relapses since. Your talk is spot on. I have ms, ms doesn't have me.
@jessimacacah
@jessimacacah 4 жыл бұрын
I'm on tysabri now. So good
@joannbarthold3032
@joannbarthold3032 4 жыл бұрын
Have you watched Dr Wahls ted talk?? It’s so helpful and inspiring. I really hope every single afflicted with this disease sees it and receives great benefits from it. God bless you
@thedreamstreampodcast9538
@thedreamstreampodcast9538 3 жыл бұрын
good luck I was Dx 1996. Still walking (albeit w/ a cane/rollator), still working-on and believing or knowing that I am going to Heal completely and reclaim lost functioning *faith*. You got this!
@ioanananan
@ioanananan 3 жыл бұрын
Doing your disease , your best partner . MS is like my alarm when I forget taking care of myself .
@tatianaguzman1895
@tatianaguzman1895 3 жыл бұрын
I wish I could tell her how much this video uplifts me on my really bad days. I can't even count how many times I've watched this.
@robinbrockelsby549
@robinbrockelsby549 3 жыл бұрын
Thank you Tatiana. We all need to be there to lift each other up on the tough days.
@_IVXX
@_IVXX 3 жыл бұрын
I'm currently watching this from the hospital, I haven't received a concrete diagnosis but all the test and scans they've done so far pointing to Ms. I kind of ignored all the signs in the beginning thinking I just had equilibrium problems, and as far as dizziness goes I'm anemic so that kind of just happens every once in a while I didn't think much of it. Even when my legs started getting heavy I thought it was just a pinched nerve like she said. It took until the point where I realized I couldn't take my car out of park without using all the strength of my left hand, and I was starting to have issues putting pressure on the brake. There were two times when I caught myself very slowly but surely inching forward at a red light. In the beginning the news was kind of songbird but if I had to be honest I always felt in the back of my mind something was going to happen when I got closer to 30. For the past few days I'll be getting steroids via IV and I'll be prescribed medication and treatment when I leave. I've been watching quite a few videos like these well taking the doctor's advice to stay off Google as far as symptoms go, cuz every worst case scenario will be right under the overview section.
@tatiannaaldonza192
@tatiannaaldonza192 3 жыл бұрын
Newly diagnosed , extremely grieving , and very emotional .
@Okie343
@Okie343 3 жыл бұрын
Get a methylmalonic acid test, which will show if your tissue level of B12 is low. This acid elevates when B12 gets low at the tissue level and dissolves the myelin sheaths from the nerves. It's often misdiagnosed as MS. You might have a genetic defect where you can't absorb B12 and will require monthly injections. A normal B12 blood test won't show the tissue level, the M acid test is what you need. Good luck
@Hheretic
@Hheretic 2 жыл бұрын
I wished I had her attitude! I been dealing with this, for a little over two decades. I'm still crushed about it. The things I really most relish, are slowly in decline. Art & music... things that require a degree of coordination, dexterity, and endurance. I can't wait, not to be here! If I were solo in this world? I could have stepped off the shelf. I'm sorry... I'm venting. Not suicidal. My mom & siblings would be destroyed! That would be, exceedingly selfish of me. So I 'stay'.
@gregoikonomakou136
@gregoikonomakou136 2 жыл бұрын
I can feel your words... We have "married" an endless fight with this disease... Personally, I catch myself talk like her for one week and the other week I am in a hole all alone... But, you said two magic words... Art and music... I strongly believe that these journeys are our hope and the half cure when they can transfer us in another dimension.. My warrior friend 🌟💜
@Hheretic
@Hheretic 2 жыл бұрын
@@gregoikonomakou136 👍🏻
@taittinger1092
@taittinger1092 2 жыл бұрын
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
@ntaliantalia7448
@ntaliantalia7448 Жыл бұрын
Oh God, I just came across your video. You are so beautiful! Ms changes us 😌 We finally glow.
@gittekronb9824
@gittekronb9824 4 жыл бұрын
I'm scared , but now I know I'm not alone thank you .. I loved how you expressed your anger towards your immune system .. I'm angerry but I will survive and never give up I definitely will make use of my tool belt ☺️ Thank you ❤️
@taraarcher4300
@taraarcher4300 4 ай бұрын
Recently diagnosed after 3years ,love you and thanks for the positive mental attitude
@lindalear5000
@lindalear5000 3 жыл бұрын
Thank you for your energy and clarity. My brain/cog fog/word finding issues because of MS are so bad that I gave up public speaking. Dx at 48 10 yrs in and happy to have aggressive treatment to "save my brain".
@vanessasmacedo
@vanessasmacedo 4 жыл бұрын
Recently I had optic neuritis, which I'm still recovering from, and I have had many tests done and sent later to a neurologist specialist in MS. I'm waiting for an appointment date with the neurologist and the anxiety kind of makes me paralyzed on keeping on living normally. I'm still hopeful this happened for some reason other than an immune disease, since they didn't find a tumor or active infection, it'd be good if it was just something that had passed, but I know it's unlikely. Thank you for your words, while I was at the hospital, not knowing if I had a tumor or an immune disease, the future seemed like something I would not be able to meet, so your words really touched me.
@sarahroskeland2106
@sarahroskeland2106 3 жыл бұрын
What happened when you saw the neurologist?
@breeannwalker8309
@breeannwalker8309 4 жыл бұрын
I'm glad you were able to get a doctor to do all those tests. It's so hard to find good doctors these days, I'm in the fight now 😔
@walkingtalking123
@walkingtalking123 4 жыл бұрын
You need to do the keto diet asap. I recommend you to wach Dr Eric Berg's youtube channel. He has a video on ms and als and its relationship with the keto diet. He has a video on where it is like what he would does if he had ms and he said he would go straight to the keto diet
@ajayaiyar9450
@ajayaiyar9450 5 ай бұрын
Listen up: I was diagnosed with MS in late 2008. It took me nearly 10 years to find the answers that I was looking for. By all accounts, I have been able to halt the progression of the disease. I have said before, I feel that I owe my life to Dr. John McDougall. May he rest in peace 💚
@megany0510
@megany0510 4 жыл бұрын
I was diagnosed a little over 18 years ago but my health has gone downhill VERY rapidly in the last 3 years. I can honestly say that this is the first talk that I have seen that makes me feel better. I'm lucky to have a wonderful husband and family that would do anything for me. However, I still get depressed about everything I have to deal with so I'm very glad I listened to this video!
@SueBabe
@SueBabe 11 ай бұрын
You got this we got this ❤
@jadedragon6696
@jadedragon6696 3 жыл бұрын
I have cried, laughed and cheered during this amazing talk Im newly diagnosed and have adopted this attitude as its the only choice we have thank you 😘💝
@MrX-cd6be
@MrX-cd6be 2 жыл бұрын
Thank you for your inspiring story that you shared with us. I myself living in Europe (thankfully we do not worry about our health-bills, since it is funded through taxes) am suffering from PPMS. After getting the diagnosis I went through the same thoughts you went through. It took and still takes a lot of effort to accept this disease. I am only 45 and have still a whole life before me. I am of the opinion that our stay on earth is a gift and we should make the best of it. I try to carry on the life as it was before the diagnoses. Thinking positive in not giving up the battle gives me the strength to go on and being happy.
@DisneyNever
@DisneyNever 4 жыл бұрын
Great talk and simple explanation of MS outsiders can understand without trying. Resistance is futile, acceptance is the best way forward. Embracing this insidious dx is my superpower. It prompts me to learn and laugh. And not just about MS. Ruminating on the future wastes the present. No one gets out of here alive.
@dougtagg9162
@dougtagg9162 3 жыл бұрын
I was diagnosed in 2016 with ppms and it DID progress in the worse way but my ability to adapt has progressed too.. My life has changed tremendously both good and bad but I will continue in my adapted way.
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