Hi I just subscribed to your channel!! I have MS!! Symptom what is 40 years ago!! I was end stage 8 years ago!! Wheelchair and all!! I've been completely unmedicated the whole time!! I beat it!! I've been getting better for 7 years! Just got done riding my bicycle from Portland Maine do Yellowstone National Park!! The key is changing the pH of your body from acidic to alkaline where disease cannot survive!! I did that with Coral calcium from Okinawa Japan and minor diet changes plus chaga tea & macha tea every day!! I kept the pH of my body at 7.5 for two years!! And have been slowly getting better ever since!! And oh yeah hi doses of vitamin B12 have been shown to regrow Milan!! So I've been taking sublingual B12 everyday for the last 7 years!! What one man can do another man can do!!! 😎🤘
This is amazing! So proud of you 🙌 Thank you for being a part of our gang and sharing your support. This is DEFINITELY something I will look into and see if I can make some changes too. Great advice, and big congrats on your bike ride. That's an incredible achievement, well done 👊🏻 🧡
So glad I found your channel; it is incredibly helpful to hear your story. I feel the best support we can get is from others with MS. Wishing you all the best!
Thank you so so much! I really appreciate that. You’re absolutely right. I feel MS is often overlooked, ignored and under appreciated. But there is an amazing community of MSers out here, and we’ve all got your back. Welcome to the Ms gang bother. I’m glad you found us too! 🙌🏻🧡🎗️
You describe exactly what happens to me. I´ve just been dx with RRMS on May of this year and, even taking Ocrevus, i feel a gradual worsening of symptoms, specially in mobility, with tingles on my legs all day. Its cool to find somebody who lives the same. Thanks for your amazing channel.
Thanks Rafael! Glad you like the channel. Sorry to hear about your diagnosis. It takes a long time to come to terms with, but we’re all here to support you. Mobility is something that I worry about, but try my best. It’s all about giving yourself a chance by recognising your limits, and working with them. Those tingles arnt fun, are they? 🙈
Hi Liam! Just found your channel. It is great to see another creator join TH-cam that has MS. It is also awesome to see male representation! We need more guys with MS sharing their journey and perspective.
Thank you for your kind words. Happy to be flying the flag 🚩🧡 I think it’s a great space to channel your creativity. Will definitely check out your channel snd subscribe 😊
Just found your channel, I was initially diagnosed with MS in 2017 after an attack of Transverse Myelitis. Within a matter of days I had numbness in my trunk area…. then down both legs… then up to my rib cage….then my hands and fingers especially. I called an ambulance for myself due to severe vertigo causing me to vomit if I opened my eyes. When I got to the hospital they gave me a high dose of steroids even though at the time they had no idea what was wrong with me. My medical team now say that saved my legs because it stopped the Transverse Myelitis from putting me in a wheelchair. I was sent for MRIs and they found one from my c4-c7 and a few spots on my brain. I was sent to an MS neurologist here in Canada and she thought I might have a few things wrong and wasn’t quite ready to give me a diagnosis yet. I had 9 MRIs in the first 2 years and went through every test possible Fast Forward to June of 2022 when I finally was diagnosed after a positive lumbar puncture. (Testing was delayed due to the state of the planet for the past 2 years) I am now going through the process of getting all my vaccines (shingles, hepatitis, tetanus, TB etc) to make sure my body is ready for DMT if I decide to go that route. Most of the damage I have and live with on a daily basis is to my arms and hands. My hands will drop things, I have some fine motor skill issues with my left hand, the skin on my arms feels like it’s burning and some days even the air hurts them so I need to put a long sleeve sweater on. I also have brain fog, trouble speaking if I get overheated or stressed, fatigue, MS Hug, vertigo, and a laundry list of others that I’m sure most of us suffer from. Thank you for creating this channel and I look forward to your content!
Im so sorry to hear that, it sounds like you’ve had a really tough experience, but I’m so glad you’ve finally got a diagnosis 🙌🏻 now the work starts, and you can look at the best next steps to kick it in the backside 👊🏻 You’ve got this, you are tough. But don’t forget there’s lots of people to support you. You’re part of the gang now, and we’ve got your back 😊 Thank you for your kind words, great to have you on board with the channel and thanks for subscribing 😊 Liam
Thank you, I appreciate that. It’s a tough condition to live with but we’re all trying our best. I hope your friends and cousin are as well as can be. Give them my love!
It definitely needs more awareness. Horrific disease (I am already blind in one eye after my first relapse :/). Although there is a lot of treatment I was surprised at how slow the research is being performed. Often trials take 4-10 years to finalize and publish, if we are to truly help people this research cycle needs to be sped up.
Oh no! How is your eye now? Is it optic neuritis? Is it constant, or intermittent? There was no progress for a long time. But in the last 10 or 15 years there had been a lot of development, so hopefully that continues to speed everything up. You’re right. It’s far to long, we need help now.
@@livingwithms yep it was/is ON. It's constant - everything is black and white in my left eye and I can barely see my fingers when hold them* in front of my face. It's been about 4-5 months since onset so it's highly likely to be permanent (no improvement at all in the last 3 months sadly). Indeed I do count myself very lucky to have some choice available for medicine. I was just surprised at some of the study durations / time till implementation in the real world. A little cynical of me but I half believe the industry enjoys having patients to sell expensive drugs to... we are easy products to milk for decades. There is no incentive to "cure" / halt MS. I will gladly and even hope to be proven wrong though :)
@@__Wanderer oh my god that's awful!! I'm so sorry to hear that, it must be really tough to learn to live with. Oh you're absolutely right. The longer anything takes, the more there is to be made. Such a sick, twisted world we live in.
hey !! just finished watching the video ; thank you man for sharing ! i have a comment on the part where u said that your symptoms are constant 3:45 ; well sometimes after a relapes the dendritic cells ( the cells responsible for buillding the myelin sheath) can repair completly the damage which means that your symptoms will go away COMPLETLY . and smetimes unfortunately the cells aren't able to repair all the damage or even none....that's why symptoms remain ; it has nothing to do with the type of MS have a good day :)
I was diagnosed 3 years ago just months before my first child. Had another a year later. I knew something was wrong when my right eye went blurry, I thought that it was my glasses, nope. Life is brutal. Walking and getting worn down like I did a 10 mile rucksack march when I really was only doing light work for 15min. I mention my children because I know that there are others like me out there. 36 male that is. My biggest things I can give you are to invest in a grounding mat, I recommend one for the bed so that you get a few hours a day. I haven't noticed any relapses since using it. A strong belief in God is my other. I won't stop either until it's game over. I have many stories that I would be happy to share with you. Side note: I really feel for you, especially when you mentioned going down the stairs. It takes all of my mental strength and constantly thinking "heel toe heel toe heel toe" so I don't fall. I wish and the community well.
I was diagnosed in Oct 2016. At age 43. Overnight I lost complete mobility of my right arm and left leg. Speech problems , vision loss in my right eye. After diognosis I refused all DMTs. I went on the MS hope diet instead And was prescribed Cannibis. Full mobility and balance returned in about a year. My vision came back in about 2 months. I have only had minor symptoms here and there since. About 5 years now back to normal. With only Random minor tingling. Cannibis usually helps immediately for that. I just had my 6th MRI 2 days ago. To find the results to compare to last year. But my 1 prior had no new lesions and some gone. Just heads up . No dairy, no gluten, no legumes, no nightshades, no soy. Nothing containing pea protein. No gums. And Read everything. Avoid may contain. Ive had nothing but improvement but my specialist still wants me to take meds. Hmmmm? Also after they reviewed an old MRI I had for nasal surgery years prior to that major attack. I already had lesions back then. So I had MS for years and didn't realize it. But i was always a pot smoker. So I guess I was also self medicating and didn't know it. I feel better now than I have in years. With diet cannibis and exercise. Just my story. I consider myself extremely lucky that it's seems to be working.
That’s amazing! I also keep an eye on my diet, but not as strict as you. Will look into it. I do smoke cannabis every evening to help with pain and sleep and have felt a really positive result. It’s such a shame due to stigma that so many sufferers don’t utilise the positive impact cannabis can have. Liam
I saw my MS specialist this past week to do some mobility and vision tests. As well as get my last MRI results. 100% remission. I no longer have to see the specialist or get yearly MRIs unless something comes up. After initially being diagnosed a 5-6 on the EDSS disability scale. Now I'm considered a 1. Without DMTs or their side effects. All my blood work is 100% normal as well.
Best Bet Diet eh? I've been looking into this diet for quite some time. I'm wondering, are you a man or woman? Also, did you have any lesions on your spine? Specifically cervical lesions? I was diagnosed June 2021, 39 year old male. I have full mobility, but constant burning sensations on my left leg and both arms...although the sensation is worse on my left arm....I believe the burning sensation, heavy/lazy feelings in my legs and arms is caused by the cervical spinal lesion...C3-C4 I'm wondering if the best bet diet can actually help me with symptoms?? There is so much different info and approaches to treating MS...I don't know who to believe or where to start. I have been taking Kesimpta since October 2021....it hasn't decreased my symptoms...like all of us, I'm looking for info on what actually works... your feedback is greatly appreciated. Thanks
Hi my name is becky im not yet diagnosed ..was diagnosed with fibro and cfs years ago..but i had a clear mri..along time ago..im on long term disabilty..im strugling so much ..my cognitve function has got so bad..i have intention tremors..and trygem nuralga..sorry for my spelling..i have had so meny problems with loss of feeling ...droping things..balance problems..i feel like i have ants cralling over me and bitting me..im waiting for an mri but theres a back log..sorry to ramble..but like you..im stedly getting worse..cant wait to see more content
Hi Rebecca! Thank you for your kind words of encouragement, it means a lot 🙏🏻 I’m so sorry that you’re going through that. That must really suck ☹️ it’s important to take everything one day at a time. You’ve already got this far 🙌🏻 you’re allowed to feel down about it and grieve, but I hope you find strength and always remember to talk.x
Wow I have been diagnosed with ADHD last month. How interesting! I also started experiencing symptoms of MS again but more intense and different symptoms from my 2016 visit that wasn't taken seriously by that neurologist. I have an appointment with a neurologist May 18. Just trying to type this and holding my phone is giving my arms at the joints and throughout my arms to my fingers a burning sensation with intense pain in my arm joints. This is a new symptom as I've been experiencing many symptoms since the end of March, 25th like fatigue, numbess where I couldn't feel my legs for a whole night, tingling everywhere, balance problems, muscle stifness and spasms, tremors, flashing spots in my eyes when I move them with some eye pain like I can feel my eyes when I move them,electric shocks when I bend my neck, heat sensitivity when shower/ bathe, pins and needles down my spine like a constant buzzing feeling, problems walking and cog fogjust to name a few. Very concerning symptoms. Contemplated going to the hospital a few times. Waiting to get this testing process started is stressing me out 😢
Sorry to hear how it's making you feel. It can be incredibly frustrating and unsetting when you're in that limbo phase waiting for tests etc... Hopefully it will be sorted soon, and you get the support you need. Really interesting in regards to the ADHD. Looking back, is it something that's been affecting you your whole life? I've realised how much it has been impacting my life, and it makes me grieve even more the life I could have had.
@@livingwithms Thanks for replying! The only think I can think of I had my whole life is anxiety. I still have it now. I'm now worried that by the time I see a neurologist on May 18th that my symptoms may disappear and this neurologist might not take me seriously like the 2016 neurologist 😔
Diagnosed with rrms in 2010. Started with Tecfidera as well. Apparently my scars have not changed since diagnosis but I went from riding a motorcycle to being stuck in a wheelchair because of my legs shaking. What I can definitely tell you, is it's a hell of a time trying to get back out of one. So never ever use one. Never set in the damn thing. I can say I walked into an inpatient physical and occupational therapy rehab that kept me 24/7 for about a month. I came out on a walker, which is embarrassing enough in and of itself to someone who wasn't even 35 at that point. Wasn't a month or two later and I was in a wheelchair and pretty much have been ever since. But I always fight and through time I have found a lot of different things that help me. I can walk a football field now. But please listen to me and never sit in a damn wheelchair. Also, tends to be a tendency once you're diagnosed with something chronic to relate everything to that. Never ever just accept that. Quite often it's incorrect. It's my personal opinion but when I asked my doctor if Ms would kill me he told me that it was normally complications associated with not the disease itself; so the opinion part on my end would be they just stop looking for anything else and attribute everything to that. Always look elsewhere and for different options of explanations I guess for lack of better words. All I can say for sure is that I've had several other things of course the neurologist blamed on MS that when I went elsewhere to ask about it turned out to be entirely different things. The complication? They didn't bother looking. Don't let that happen to you my friend.
Just found your channel today and I just got 20 different blood test taken last week. I was in the hospital back in 2014 or 15. I can’t remember and they found lesions on my brain and kept me for a week and said we think you have a MS, but we don’t wanna put that on you. And because I almost went blind completely, and drove off into the ocean over a bridge my legs are always numb. The middle of my back is numb my mouth up onto my right eye goes numb. I get spotty vision. Along with my arms in my hands so now I’m just waiting to find out because here in the United States If multiple sclerosis is suspected and you go on the MultipleSclerosis association come on, let’s website and have your doctor fill out the paperwork beside you if they approve it, they will pay up to $750 per MRI up to two so I’m waiting to see if they’ll approve that, and also my blood work it sounds like lupus might be suspected to that not want to either one, but I definitely don’t want lupus but thank you for putting this information now and it’s very important that people are educated even if they don’t have it in case someone in their family or friend has it
Glad you found the channel! 🙌🏻 Sorry to hear you’re having a negative experience. It does sounds like a complicated process over the pond! 😞 hopefully it gives you some answers and you can start to make changes and see improvements. Stick around here though, we’re all here to support you 🧡
Just seen this now - thanks for sharing! I was diagnosed with RRMS Sept 2021, and started treatment in Aug 2022. You mentioned about your legs getting worse even though your brain scan hasn't shown any worsening. I've been doing some foot exercises that my mum gave me (as they do!) and I noticed that when I stop doing them I end up having more problems with my legs. It makes me wonder how important it could be to be really proactive in keeping our muscles working well, so it takes less brain power to make them work? I realise this could be something you already do/have tried so my apologies if this comment is un-warrented!
Thank you so much for your lovely comment, Sarah 🧡 sorry to hear about your diagnosis. It’s a lot to take in, but you’re part of the gang now. We’ve got your back! 👊🏻 Yeah, my last scan was a couple of years ago. Showed no progression but definitely need to look after my legs more. Tired, stiff, sore and tingly. Not great. I need to be more proactive, so exercises are really important. The expression with mobility and MS is usually “use it or lose it”. If you’re not using your legs enough, or exercising, it’s more likely to get worse, scan activity or not.
@@livingwithms exactly! That's my experience too (tired/stiff/tingly) - exercise one way or another is so important! My recommendation is "the melt method" by hiltzmann. The book is a little bit weird but it has a bunch of exercises and it recommends a select few for people with MS, and it's only about 10-15 minutes a day (or every other day) and it's really relaxed. Happy to point to useful pages of you want them ☺️
How was your experience with Cladribine? I am currently on Tecfidera and am also considering Cladribine if my scan shows more lesions. Seems like the closest thing to HSCT one can do... I am worried about isolating for a long period / becoming infected due to the drop in white blood cells.
Cladrabine has been great in all honesty. Yes you need to be sensible during your treatment period, but it’s very doable. With it being an aggressive treatment the results have been great. No new progression or lesions! So far so good 🤞🏻
i found out i had r&r ms in 2009 i think they need to work on lowering the cost of ms meds becasese i have to pay 7000 evert 30 days for my ms meds i think i have the same a u i am on tasbri snice 213
Hi Liam, are you familiar with Dr. Alan Macdonald’s discussion on MS and the autopsies he performed on 10 MS patients? Well, in all 10 autopsies, he found filarial worms in the cerebral spinal fluid of the patients. PARASITE INFECTION. He did these autopsies in follow up to a 1950s veterinarian report showing animals that had the same MS symptoms. He made it a point to note that no one had touch that paper, other than him, since it was published. We all know why!!! His discussion on TH-cam is called - MS is a parasitosis.
U know what doctors know nothing of these symptoms They think its other things first n u try out the meds ....it helps for a little time n it gets worse I think doc should do a vigorous testing first cos nobody has time now to come back and take an extra 3nths to check if the undiagnosed treatment works Time is short n now things have to change..... Do autoimmune testing ,mri lumber puncher....history of family....n give strong meds to stop condition from progressing
@@lillyaswad5028 I had an unsuccessful experience with Techfidira, but moved on to Cladribine, which as been better. No new activity on my last scan 🙌🏻
Oh no! Is it distracting, or do you not like the track? I try to put some music on to hide some of the reverb and audio fixes. Do you think it would be better with no backing track?
@@livingwithms You are so kind not to take offense. As a rule, I am against people talking with background music. You are not selling a product by mood. The music is annoying and is on a short loop. It just repeats, repeats, repeats. I would prefer no music at all. Can you imagine watching nightly national news with your background music? You have an important message. I think the music unintentionally soft pedalls the message of this serious disease. (It's not so bad afterall.) Best of luck to you and your mission. I hope you live forever.
@@DCFunBud thank you for the feedback! I’ve just uploaded my best video, already with music, but I’m definitely going to give it some thought. You raise a good point! 👍🏻
Hi I just subscribed to your channel!! I have MS!! Symptom what is 40 years ago!! I was end stage 8 years ago!! Wheelchair and all!! I've been completely unmedicated the whole time!! I beat it!! I've been getting better for 7 years! Just got done riding my bicycle from Portland Maine do Yellowstone National Park!! The key is changing the pH of your body from acidic to alkaline where disease cannot survive!! I did that with Coral calcium from Okinawa Japan and minor diet changes plus chaga tea & macha tea every day!! I kept the pH of my body at 7.5 for two years!! And have been slowly getting better ever since!! And oh yeah hi doses of vitamin B12 have been shown to regrow Milan!! So I've been taking sublingual B12 everyday for the last 7 years!! What one man can do another man can do!!! 😎🤘
This is amazing! So proud of you 🙌 Thank you for being a part of our gang and sharing your support. This is DEFINITELY something I will look into and see if I can make some changes too. Great advice, and big congrats on your bike ride. That's an incredible achievement, well done 👊🏻 🧡
So glad I found your channel; it is incredibly helpful to hear your story. I feel the best support we can get is from others with MS. Wishing you all the best!
Thank you so so much! I really appreciate that. You’re absolutely right. I feel MS is often overlooked, ignored and under appreciated.
But there is an amazing community of MSers out here, and we’ve all got your back. Welcome to the Ms gang bother. I’m glad you found us too! 🙌🏻🧡🎗️
new diagnosis 3 weeks ago info overload but glad i found this channel
Thanks Mark, glad to hear it! Sorry you’re having to go through this, but hope these help. We’re with ya! 👊🏻
You describe exactly what happens to me. I´ve just been dx with RRMS on May of this year and, even taking Ocrevus, i feel a gradual worsening of symptoms, specially in mobility, with tingles on my legs all day. Its cool to find somebody who lives the same. Thanks for your amazing channel.
Thanks Rafael! Glad you like the channel. Sorry to hear about your diagnosis. It takes a long time to come to terms with, but we’re all here to support you.
Mobility is something that I worry about, but try my best. It’s all about giving yourself a chance by recognising your limits, and working with them.
Those tingles arnt fun, are they? 🙈
Hi Liam! Just found your channel. It is great to see another creator join TH-cam that has MS. It is also awesome to see male representation! We need more guys with MS sharing their journey and perspective.
Thank you for your kind words. Happy to be flying the flag 🚩🧡
I think it’s a great space to channel your creativity. Will definitely check out your channel snd subscribe 😊
Just found your channel, I was initially diagnosed with MS in 2017 after an attack of Transverse Myelitis. Within a matter of days I had numbness in my trunk area…. then down both legs… then up to my rib cage….then my hands and fingers especially. I called an ambulance for myself due to severe vertigo causing me to vomit if I opened my eyes. When I got to the hospital they gave me a high dose of steroids even though at the time they had no idea what was wrong with me. My medical team now say that saved my legs because it stopped the Transverse Myelitis from putting me in a wheelchair. I was sent for MRIs and they found one from my c4-c7 and a few spots on my brain. I was sent to an MS neurologist here in Canada and she thought I might have a few things wrong and wasn’t quite ready to give me a diagnosis yet. I had 9 MRIs in the first 2 years and went through every test possible Fast Forward to June of 2022 when I finally was diagnosed after a positive lumbar puncture. (Testing was delayed due to the state of the planet for the past 2 years) I am now going through the process of getting all my vaccines (shingles, hepatitis, tetanus, TB etc) to make sure my body is ready for DMT if I decide to go that route. Most of the damage I have and live with on a daily basis is to my arms and hands. My hands will drop things, I have some fine motor skill issues with my left hand, the skin on my arms feels like it’s burning and some days even the air hurts them so I need to put a long sleeve sweater on. I also have brain fog, trouble speaking if I get overheated or stressed, fatigue, MS Hug, vertigo, and a laundry list of others that I’m sure most of us suffer from. Thank you for creating this channel and I look forward to your content!
Im so sorry to hear that, it sounds like you’ve had a really tough experience, but I’m so glad you’ve finally got a diagnosis 🙌🏻 now the work starts, and you can look at the best next steps to kick it in the backside 👊🏻
You’ve got this, you are tough. But don’t forget there’s lots of people to support you. You’re part of the gang now, and we’ve got your back 😊
Thank you for your kind words, great to have you on board with the channel and thanks for subscribing 😊
Liam
Hey man, I got diagnosed last year. I really appreciate you shinning light on ms.
Thanks Tom! 🙏🏻 really appreciate it. Sorry hear about your diagnosis. How are you finding your symptoms?
I was diagnosed with RRMS in 2013. Thanks for sharing your experience here.
Thanks for checking out the videos 🙌🏻 how did you find your diagnosis experience?
I have two friends and a cousin who has MS . I am so sorry that you are going through this!
Thank you, I appreciate that. It’s a tough condition to live with but we’re all trying our best. I hope your friends and cousin are as well as can be. Give them my love!
@@livingwithms I will!
I really enjoyed this video, diagnosed in 1996.
Ah thank you! Glad you enjoyed it ☺️ thanks for being part of your gang 🙏🏻🧡
It definitely needs more awareness. Horrific disease (I am already blind in one eye after my first relapse :/). Although there is a lot of treatment I was surprised at how slow the research is being performed. Often trials take 4-10 years to finalize and publish, if we are to truly help people this research cycle needs to be sped up.
Oh no! How is your eye now? Is it optic neuritis? Is it constant, or intermittent?
There was no progress for a long time. But in the last 10 or 15 years there had been a lot of development, so hopefully that continues to speed everything up.
You’re right. It’s far to long, we need help now.
@@livingwithms yep it was/is ON. It's constant - everything is black and white in my left eye and I can barely see my fingers when hold them* in front of my face. It's been about 4-5 months since onset so it's highly likely to be permanent (no improvement at all in the last 3 months sadly). Indeed I do count myself very lucky to have some choice available for medicine. I was just surprised at some of the study durations / time till implementation in the real world. A little cynical of me but I half believe the industry enjoys having patients to sell expensive drugs to... we are easy products to milk for decades. There is no incentive to "cure" / halt MS. I will gladly and even hope to be proven wrong though :)
@@__Wanderer oh my god that's awful!! I'm so sorry to hear that, it must be really tough to learn to live with.
Oh you're absolutely right. The longer anything takes, the more there is to be made. Such a sick, twisted world we live in.
hey !! just finished watching the video ; thank you man for sharing ! i have a comment on the part where u said that your symptoms are constant 3:45 ; well sometimes after a relapes the dendritic cells ( the cells responsible for buillding the myelin sheath) can repair completly the damage which means that your symptoms will go away COMPLETLY . and smetimes unfortunately the cells aren't able to repair all the damage or even none....that's why symptoms remain ; it has nothing to do with the type of MS
have a good day :)
Wow! I didn’t know that. Thank you so much for sharing 🙌🏻 really appreciate it 😃 🙏🏻
I was diagnosed 3 years ago just months before my first child. Had another a year later. I knew something was wrong when my right eye went blurry, I thought that it was my glasses, nope. Life is brutal. Walking and getting worn down like I did a 10 mile rucksack march when I really was only doing light work for 15min. I mention my children because I know that there are others like me out there. 36 male that is. My biggest things I can give you are to invest in a grounding mat, I recommend one for the bed so that you get a few hours a day. I haven't noticed any relapses since using it. A strong belief in God is my other. I won't stop either until it's game over. I have many stories that I would be happy to share with you. Side note: I really feel for you, especially when you mentioned going down the stairs. It takes all of my mental strength and constantly thinking "heel toe heel toe heel toe" so I don't fall. I wish and the community well.
I was diagnosed 4 years ago and finally on ocrevus and doing well
That’s brilliant - glad you’re doing well. Have you been on other DMTs before?
I think you will be descovered and have even more subscribers. I think more people should see this
Thank you so much! 🙏🏻 that means a lot.
That would be nice, I’m so grateful to be even helping people a little bit.
Thank you for your support 🙏🏻
I was diagnosed in Oct 2016. At age 43. Overnight I lost complete mobility of my right arm and left leg. Speech problems , vision loss in my right eye. After diognosis I refused all DMTs. I went on the MS hope diet instead And was prescribed Cannibis. Full mobility and balance returned in about a year. My vision came back in about 2 months. I have only had minor symptoms here and there since. About 5 years now back to normal. With only Random minor tingling. Cannibis usually helps immediately for that. I just had my 6th MRI 2 days ago. To find the results to compare to last year. But my 1 prior had no new lesions and some gone. Just heads up .
No dairy, no gluten, no legumes, no nightshades, no soy. Nothing containing pea protein. No gums. And Read everything. Avoid may contain.
Ive had nothing but improvement but my specialist still wants me to take meds. Hmmmm?
Also after they reviewed an old MRI I had for nasal surgery years prior to that major attack. I already had lesions back then. So I had MS for years and didn't realize it. But i was always a pot smoker. So I guess I was also self medicating and didn't know it. I feel better now than I have in years. With diet cannibis and exercise. Just my story. I consider myself extremely lucky that it's seems to be working.
That’s amazing! I also keep an eye on my diet, but not as strict as you. Will look into it. I do smoke cannabis every evening to help with pain and sleep and have felt a really positive result. It’s such a shame due to stigma that so many sufferers don’t utilise the positive impact cannabis can have.
Liam
I saw my MS specialist this past week to do some mobility and vision tests. As well as get my last MRI results. 100% remission. I no longer have to see the specialist or get yearly MRIs unless something comes up. After initially being diagnosed a 5-6 on the EDSS disability scale. Now I'm considered a 1. Without DMTs or their side effects.
All my blood work is 100% normal as well.
@@drunkeykong2832 that’s amazing!!! I’m so pleased for you. That must be a great feeling!!!
Best Bet Diet eh? I've been looking into this diet for quite some time.
I'm wondering, are you a man or woman? Also, did you have any lesions on your spine? Specifically cervical lesions? I was diagnosed June 2021, 39 year old male. I have full mobility, but constant burning sensations on my left leg and both arms...although the sensation is worse on my left arm....I believe the burning sensation, heavy/lazy feelings in my legs and arms is caused by the cervical spinal lesion...C3-C4
I'm wondering if the best bet diet can actually help me with symptoms?? There is so much different info and approaches to treating MS...I don't know who to believe or where to start.
I have been taking Kesimpta since October 2021....it hasn't decreased my symptoms...like all of us, I'm looking for info on what actually works...
your feedback is greatly appreciated.
Thanks
Hi my name is becky im not yet diagnosed ..was diagnosed with fibro and cfs years ago..but i had a clear mri..along time ago..im on long term disabilty..im strugling so much ..my cognitve function has got so bad..i have intention tremors..and trygem nuralga..sorry for my spelling..i have had so meny problems with loss of feeling ...droping things..balance problems..i feel like i have ants cralling over me and bitting me..im waiting for an mri but theres a back log..sorry to ramble..but like you..im stedly getting worse..cant wait to see more content
Hi Rebecca! Thank you for your kind words of encouragement, it means a lot 🙏🏻
I’m so sorry that you’re going through that. That must really suck ☹️ it’s important to take everything one day at a time. You’ve already got this far 🙌🏻 you’re allowed to feel down about it and grieve, but I hope you find strength and always remember to talk.x
What's the status now? Did you get diagnosed with or still just fibro and CFS?
Wow I have been diagnosed with ADHD last month. How interesting! I also started experiencing symptoms of MS again but more intense and different symptoms from my 2016 visit that wasn't taken seriously by that neurologist. I have an appointment with a neurologist May 18. Just trying to type this and holding my phone is giving my arms at the joints and throughout my arms to my fingers a burning sensation with intense pain in my arm joints. This is a new symptom as I've been experiencing many symptoms since the end of March, 25th like fatigue, numbess where I couldn't feel my legs for a whole night, tingling everywhere, balance problems, muscle stifness and spasms, tremors, flashing spots in my eyes when I move them with some eye pain like I can feel my eyes when I move them,electric shocks when I bend my neck, heat sensitivity when shower/ bathe, pins and needles down my spine like a constant buzzing feeling, problems walking and cog fogjust to name a few. Very concerning symptoms. Contemplated going to the hospital a few times. Waiting to get this testing process started is stressing me out 😢
Sorry to hear how it's making you feel. It can be incredibly frustrating and unsetting when you're in that limbo phase waiting for tests etc... Hopefully it will be sorted soon, and you get the support you need.
Really interesting in regards to the ADHD. Looking back, is it something that's been affecting you your whole life? I've realised how much it has been impacting my life, and it makes me grieve even more the life I could have had.
@@livingwithms Thanks for replying! The only think I can think of I had my whole life is anxiety. I still have it now. I'm now worried that by the time I see a neurologist on May 18th that my symptoms may disappear and this neurologist might not take me seriously like the 2016 neurologist 😔
Diagnosed with rrms in 2010. Started with Tecfidera as well. Apparently my scars have not changed since diagnosis but I went from riding a motorcycle to being stuck in a wheelchair because of my legs shaking. What I can definitely tell you, is it's a hell of a time trying to get back out of one. So never ever use one. Never set in the damn thing. I can say I walked into an inpatient physical and occupational therapy rehab that kept me 24/7 for about a month. I came out on a walker, which is embarrassing enough in and of itself to someone who wasn't even 35 at that point. Wasn't a month or two later and I was in a wheelchair and pretty much have been ever since. But I always fight and through time I have found a lot of different things that help me. I can walk a football field now. But please listen to me and never sit in a damn wheelchair. Also, tends to be a tendency once you're diagnosed with something chronic to relate everything to that. Never ever just accept that. Quite often it's incorrect. It's my personal opinion but when I asked my doctor if Ms would kill me he told me that it was normally complications associated with not the disease itself; so the opinion part on my end would be they just stop looking for anything else and attribute everything to that. Always look elsewhere and for different options of explanations I guess for lack of better words. All I can say for sure is that I've had several other things of course the neurologist blamed on MS that when I went elsewhere to ask about it turned out to be entirely different things. The complication? They didn't bother looking. Don't let that happen to you my friend.
Just found your channel love it
Ah that’s great! Thank you ☺️ hope you enjoy more content to come 🙏🏻
Just found your channel today and I just got 20 different blood test taken last week. I was in the hospital back in 2014 or 15. I can’t remember and they found lesions on my brain and kept me for a week and said we think you have a MS, but we don’t wanna put that on you. And because I almost went blind completely, and drove off into the ocean over a bridge my legs are always numb. The middle of my back is numb my mouth up onto my right eye goes numb. I get spotty vision. Along with my arms in my hands so now I’m just waiting to find out because here in the United States If multiple sclerosis is suspected and you go on the MultipleSclerosis association come on, let’s website and have your doctor fill out the paperwork beside you if they approve it, they will pay up to $750 per MRI up to two so I’m waiting to see if they’ll approve that, and also my blood work it sounds like lupus might be suspected to that not want to either one, but I definitely don’t want lupus but thank you for putting this information now and it’s very important that people are educated even if they don’t have it in case someone in their family or friend has it
Glad you found the channel! 🙌🏻
Sorry to hear you’re having a negative experience. It does sounds like a complicated process over the pond! 😞 hopefully it gives you some answers and you can start to make changes and see improvements. Stick around here though, we’re all here to support you 🧡
Thanks so much
You’re welcome 😊
Just seen this now - thanks for sharing!
I was diagnosed with RRMS Sept 2021, and started treatment in Aug 2022.
You mentioned about your legs getting worse even though your brain scan hasn't shown any worsening. I've been doing some foot exercises that my mum gave me (as they do!) and I noticed that when I stop doing them I end up having more problems with my legs. It makes me wonder how important it could be to be really proactive in keeping our muscles working well, so it takes less brain power to make them work?
I realise this could be something you already do/have tried so my apologies if this comment is un-warrented!
Thank you so much for your lovely comment, Sarah 🧡 sorry to hear about your diagnosis. It’s a lot to take in, but you’re part of the gang now. We’ve got your back! 👊🏻
Yeah, my last scan was a couple of years ago. Showed no progression but definitely need to look after my legs more. Tired, stiff, sore and tingly. Not great.
I need to be more proactive, so exercises are really important. The expression with mobility and MS is usually “use it or lose it”. If you’re not using your legs enough, or exercising, it’s more likely to get worse, scan activity or not.
@@livingwithms exactly! That's my experience too (tired/stiff/tingly) - exercise one way or another is so important!
My recommendation is "the melt method" by hiltzmann. The book is a little bit weird but it has a bunch of exercises and it recommends a select few for people with MS, and it's only about 10-15 minutes a day (or every other day) and it's really relaxed.
Happy to point to useful pages of you want them ☺️
Maybe you need a different treatment to stop systems.
How was your experience with Cladribine? I am currently on Tecfidera and am also considering Cladribine if my scan shows more lesions. Seems like the closest thing to HSCT one can do... I am worried about isolating for a long period / becoming infected due to the drop in white blood cells.
Cladrabine has been great in all honesty. Yes you need to be sensible during your treatment period, but it’s very doable. With it being an aggressive treatment the results have been great. No new progression or lesions! So far so good 🤞🏻
@@livingwithms Amazing! Great to hear :)
i found out i had r&r ms in 2009 i think they need to work on lowering the cost of ms meds becasese i have to pay 7000 evert 30 days for my ms meds i think i have the same a u i am on tasbri snice 213
Hi Liam, are you familiar with Dr. Alan Macdonald’s discussion on MS and the autopsies he performed on 10 MS patients? Well, in all 10 autopsies, he found filarial worms in the cerebral spinal fluid of the patients. PARASITE INFECTION. He did these autopsies in follow up to a 1950s veterinarian report showing animals that had the same MS symptoms. He made it a point to note that no one had touch that paper, other than him, since it was published. We all know why!!!
His discussion on TH-cam is called - MS is a parasitosis.
I weakness I had worms causing g this, that could be treatec.
U know what doctors know nothing of these symptoms
They think its other things first n u try out the meds ....it helps for a little time n it gets worse
I think doc should do a vigorous testing first cos nobody has time now to come back and take an extra 3nths to check if the undiagnosed treatment works
Time is short n now things have to change.....
Do autoimmune testing ,mri lumber puncher....history of family....n give strong meds to stop condition from progressing
I’m hearing this more and more. That doctors, assessors, they don’t seem to know a lot about MS at all. It’s so frustrating!
Iv seen a lot of people have success with medication, is that not the case for you?
@@lillyaswad5028 I had an unsuccessful experience with Techfidira, but moved on to Cladribine, which as been better. No new activity on my last scan 🙌🏻
Do you have a lot of issues with vertigo?
I haven’t had vertigo as such… but definitely lose my balance a lot and have the occasional fall or trip.
Primary progressive
I am so sorry to hear that Hamzo. How are you finding things so far? Stay strong brother 🙏🏻
That background music has to go!
Oh no! Is it distracting, or do you not like the track? I try to put some music on to hide some of the reverb and audio fixes.
Do you think it would be better with no backing track?
@@livingwithms You are so kind not to take offense. As a rule, I am against people talking with background music. You are not selling a product by mood. The music is annoying and is on a short loop. It just repeats, repeats, repeats. I would prefer no music at all. Can you imagine watching nightly national news with your background music? You have an important message. I think the music unintentionally soft pedalls the message of this serious disease. (It's not so bad afterall.) Best of luck to you and your mission. I hope you live forever.
@@DCFunBud thank you for the feedback! I’ve just uploaded my best video, already with music, but I’m definitely going to give it some thought. You raise a good point! 👍🏻
eat less than 10g of saturated fat per day.
That’s a great shout! I’ve been really trying to keep them out my diet too.