If you would like to apply to be on my channel please fill out this form: lauratalksmsapplication.brizy.site/ Ed shares his story with his MS in this video. He talks about his diagnosis, about how life is for him, how he copes with his MS and what life is like on ocrevus treatment. I hope you all find this video informative, I believe sharing will help us raise awareness of this disease and talking is a great support to each other. If you'd like to contact Ed his details are in the video description. Watch out for the next video which will be out soon 🧡
My brother has recently been diagnosed with PPMS. He came to live with us after his wife decided she'd had enough. Like Ed he has a hernia (going for surgery next month at last) and struggles to urinate. I don't think any of his doctors seem to see any connection there. Like Ed he has white matter disease in his frontal lobes. He's been medically boarded and is struggling to walk. And like Ed I suspect this started in his teens. He's now 60. Unlike Ed he seems pretty unconcerned about it all, he says he feels no stress. No approved drug in this country, but he's taking LDN and I've got him on a healthy diet and these seem to be helping. No active lesions in his most recent MRI. Thank you for this helpful video.
I’ve had PPMS for 30 years I figure, only diagnosed 7 years ago, last 3-4 it has really started to limit me. Only just started Ocrevus 2 weeks ago. I should have have been on it years ago, guess I could blame Covid but also my fault for not pushing for it and going along with Dr. Saying you’re not bad enough yet. So now I’m bad enough but damage is done and there is now going back. All I’m saying here is don’t sit back and take the let’s see attitude, it’s your body so push in a friendly way or see another Dr. That’s my truth. Keep your head up. 🙏
So grateful for this. Talking about MS is so difficult and I'm so glad to hear experiences of others and feel less isolated. I am reading Dr. Terry Wahls approach on diet and lifestyle changes and how they made her overcome her secondary progressive MS. And the potential effects of Zeolite for detoxing heavy metals that can lead to such chronic problems such as MS
Hi all M.S M.S WARRIORS Thanks for the bloopers 🤣🤣 Comment to come, I'm going to watch it a few more times. Cool dude😎 All good here, staying positive, I now have the internet 🥳🥳
Hey Kit, nice to hear from you and glad you're keeping well. It would be great to have you share your story with us if you'd like to 😊 I don't bite.. Well just a little! So nice to hear you're staying positive too 💪👍🤘
@@lauraironstalksms I would like that, I will need time to phyic myself up to that, autistic brain, and I need new teeth, I lost mine saving my dog from drowning, and my dentists tooth dude, shot himself in the eye, with a crossbow???? How??? Real life is much more entertaining than the telly,
You take all the time you need. I'll be here waiting. We could do short bursts if it helps. Concentration is not my forte! Thank you for your kind words I appreciate them.
Well i had my diagnosis in 2019 My husband treated me horribly from 2015 ,i think when my symptoms of ms started He always treated me badly but it got worse when i was truly weak ,could not do things quickly,became slower in thinking n talking,fatigue was a major factor n my gait was not not normal Sooo the stress of my husband aggravated the condition 😢
It's so good to hear everyone's experience. It is EXTREMELY IMPORTANT to know your own body, and to be quite alert with what's going on. Ocrie is amazing.
Yes Shay I agree about getting to know you're own body. That definitely comes in time. Can't wait for you to share your story 😉😍. Hope you're doing well, sending you good positive vibes from Wales (and the dogs) 🐶🐶
Ocrevus is the only dmt approved for ppms. Its main benefit is to slow the progression of MS. Not all who are on Ocrevus experience the benefits Ed attributes to ocrevus.
Guten Tag. Ich habe seit 4 Monaten Geh Beschwerden und Fatigue und Krämpfe und Schwäche in den Beinen und Nervenbrennen. MRT 2mal negativ und Lumbalpunktion negativ. Kein Arzt nimmt es ernst. Ich denke, dass es PPMS ist denn die Symptome sind da. Ich bin 55.Kann mir jemand irgendwie aus Erfahrung etwas sagen?
I am in Lk Tahoe NV. I have PPMS DIAGNOSED 8/2015. I feel horrible. Scared. Have fallen many times. Broken many bones. No future.No balance. Motorskill loss. Each day grows bleaker for me. No real support from neurologist. Very isolated.
Research has shown Ocrevus dose slow down, PPMS. When you get a lesion it will shrink, naturally ending in what they call a black hole. My understanding is Ocrevus on it's own only kills off the B cells. 6 hours for the infusion, that's something to look forward to😒 On the 22 Feb, I'm going to see my neurologist, hopefully I'm going to get my date to go on Ocrevus, and to see if I can see my scan. The ms buddy is a great idea, I have a mantra This s#*! Will slow me down, But it won't stop me. The day I start thinking my MS will stop me is the day I stop living, I'm going to bloody well have a go, at least I can say I've tried. I'd like to jog up the road, but I'm not to keen on face planting the pavement. But I had a go, it's the simple little things that can weigh heavy on the mind, A collection of those can sneak up on you, and mess with your head. I can see you on good morning Briton, your a natural, and you have face for TV. That's actually a compliment. Love peace and happiness to all you hold dear in your hearts.
If you would like to apply to be on my channel please fill out this form: lauratalksmsapplication.brizy.site/
Ed shares his story with his MS in this video. He talks about his diagnosis, about how life is for him, how he copes with his MS and what life is like on ocrevus treatment. I hope you all find this video informative, I believe sharing will help us raise awareness of this disease and talking is a great support to each other.
If you'd like to contact Ed his details are in the video description.
Watch out for the next video which will be out soon 🧡
Hey, that's me!! This was so fun.
Had so much fun chatting with you. Thanks so much for being the first, its a brave step to raising awareness 💪👍
My brother has recently been diagnosed with PPMS. He came to live with us after his wife decided she'd had enough. Like Ed he has a hernia (going for surgery next month at last) and struggles to urinate. I don't think any of his doctors seem to see any connection there. Like Ed he has white matter disease in his frontal lobes. He's been medically boarded and is struggling to walk. And like Ed I suspect this started in his teens. He's now 60. Unlike Ed he seems pretty unconcerned about it all, he says he feels no stress. No approved drug in this country, but he's taking LDN and I've got him on a healthy diet and these seem to be helping. No active lesions in his most recent MRI. Thank you for this helpful video.
I’ve had PPMS for 30 years I figure, only diagnosed 7 years ago, last 3-4 it has really started to limit me. Only just started Ocrevus 2 weeks ago. I should have have been on it years ago, guess I could blame Covid but also my fault for not pushing for it and going along with Dr. Saying you’re not bad enough yet.
So now I’m bad enough but damage is done and there is now going back.
All I’m saying here is don’t sit back and take the let’s see attitude, it’s your body so push in a friendly way or see another Dr. That’s my truth. Keep your head up. 🙏
stay positive, focus on what you can control
I have Crohn’s disease on top of ppms and 45 years old, I can relate to so many things that Ed said. It’s scary.
I'm so sorry that you're struggling so much. Try the London diet for your Crohn's.
So grateful for this. Talking about MS is so difficult and I'm so glad to hear experiences of others and feel less isolated. I am reading Dr. Terry Wahls approach on diet and lifestyle changes and how they made her overcome her secondary progressive MS. And the potential effects of Zeolite for detoxing heavy metals that can lead to such chronic problems such as MS
So glad it helped you in some way. MS can make some of us feel isolated and talking with others just helps to let us know that we're not alone 🧡
Hi all M.S M.S WARRIORS
Thanks for the bloopers 🤣🤣
Comment to come, I'm going to watch it a few more times.
Cool dude😎
All good here, staying positive, I now have the internet 🥳🥳
Hey Kit, nice to hear from you and glad you're keeping well. It would be great to have you share your story with us if you'd like to 😊 I don't bite.. Well just a little! So nice to hear you're staying positive too 💪👍🤘
@@lauraironstalksms I would like that, I will need time to phyic myself up to that, autistic brain, and I need new teeth, I lost mine saving my dog from drowning, and my dentists tooth dude, shot himself in the eye, with a crossbow???? How???
Real life is much more entertaining than the telly,
Ooooh, Ed is my MS buddy!!! It's like being friends with a celebrity!!!
Oh, he's a great MS buddy to have! 😊
You take all the time you need. I'll be here waiting. We could do short bursts if it helps. Concentration is not my forte! Thank you for your kind words I appreciate them.
Awesome thanks Ed for sharing your story!! It really hit home.
Well i had my diagnosis in 2019
My husband treated me horribly from 2015 ,i think when my symptoms of ms started
He always treated me badly but it got worse when i was truly weak ,could not do things quickly,became slower in thinking n talking,fatigue was a major factor n my gait was not not normal
Sooo the stress of my husband aggravated the condition 😢
It's so good to hear everyone's experience. It is EXTREMELY IMPORTANT to know your own body, and to be quite alert with what's going on. Ocrie is amazing.
Yes Shay I agree about getting to know you're own body. That definitely comes in time.
Can't wait for you to share your story 😉😍. Hope you're doing well, sending you good positive vibes from Wales (and the dogs) 🐶🐶
Hallo, darf ich fragen wie die Diagnose gestellt wurde. Ich meine MRT oder Nervenwasser?
Ocrevus is the only dmt approved for ppms. Its main benefit is to slow the progression of MS. Not all who are on Ocrevus experience the benefits Ed attributes to ocrevus.
I'm sure they don't, but this is Ed's story
Guten Tag. Ich habe seit 4 Monaten Geh Beschwerden und Fatigue und Krämpfe und Schwäche in den Beinen und Nervenbrennen. MRT 2mal negativ und Lumbalpunktion negativ. Kein Arzt nimmt es ernst. Ich denke, dass es PPMS ist denn die Symptome sind da. Ich bin 55.Kann mir jemand irgendwie aus Erfahrung etwas sagen?
I am in Lk Tahoe NV. I have PPMS DIAGNOSED 8/2015. I feel horrible. Scared. Have fallen many times. Broken many bones. No future.No balance. Motorskill loss. Each day grows bleaker for me. No real support from neurologist. Very isolated.
So sorry you feel like this, Ed also has PPMS and has reached out. There's lots of support here if you ever need it, please don't feel alone.
Hallo, darf ich fragen, wie die Diagnose gestellt wurde. Ich meine MRT oder Nervenwasser.
Research has shown Ocrevus dose slow down, PPMS.
When you get a lesion it will shrink, naturally ending in what they call a black hole.
My understanding is Ocrevus on it's own only kills off the B cells.
6 hours for the infusion, that's something to look forward to😒
On the 22 Feb, I'm going to see my neurologist, hopefully I'm going to get my date to go on Ocrevus, and to see if I can see my scan.
The ms buddy is a great idea,
I have a mantra
This s#*! Will slow me down, But it won't stop me.
The day I start thinking my MS will stop me is the day I stop living,
I'm going to bloody well have a go, at least I can say I've tried.
I'd like to jog up the road, but I'm not to keen on face planting the pavement.
But I had a go, it's the simple little things that can weigh heavy on the mind,
A collection of those can sneak up on you, and mess with your head.
I can see you on good morning Briton, your a natural, and you have face for TV.
That's actually a compliment.
Love peace and happiness to all you hold dear in your hearts.