I picked Tysabri straight off as it didn't compromise my immune system. I tested positive for the JC virus so my neurologist reccomended Ocrevus as Lemtrada was too risky with 3 children at school. I started Ocrevus in September and its going OK. I was very weak and tired for a weeks after my second infusion but I'm doing good now. Good luck with whatever treatment you pick 🍀
Hi Susan, thanks for letting me know about your experience, it is really useful in helping me decide! It is looking likely for me that it will be Ocrevus, although I am keen to do Lemtrada as even though it has the most side effects, in my opinion it seems to have the best chance of long term remission. But Tysabri and Ocrevus aren't far behind so whatever I choose I am optimistic I will have good results. Thanks for the kind words and hoping that Ocrevus keeps working for you!
I'm currently waiting to hear back on my diagnosis to understand the different treatment options. Internet can be scary place to research- so I appreciate the informative breakdown!
Hey Makda glad my video was useful! But yes there’s a lot of scary stuff out there so just gotta focus on what’s important and stay positive! Do let me know what you decide to go on and how it goes!
@@tomgarbett77 Will do! In your previous video you mentioned changing up your diet significantly. Have you found that to be helpful in your symptom management?
@@makda4407 Yes, I have gone on the Best Bed Diet since February and all of my symptoms have either gone completely or lessened dramatically! SO for me the diet definitely has contributed to this and I am hopeful that it will help to keep the disease at bay. So I would definitely recommend you looking into because I have heard of so many success stories of people on the diet as well!
@@tomgarbett77 Thank you! I looked into the diet after watching your video a week ago and I've already noticed a difference in my energy levels and some reduction in my symptoms. My symptoms are primarily numbness in fingers, vibration/heaviness through the legs, pain in the neck, headache and balance issues. How long would you say it took after making the changes for you to see significant changes? I'm sure it's different for everyone but it's good to have a baseline!
@@makda4407 Ah that is brilliant that you've noticed a reduction already in symptoms! What diet are you trying? It's hard to say with me because I had two relapses and one brought on all sorts of sensory issues, but that big relapse was in April and now I've been 100% for a good couple of months I would say, but I would say I was 90% better within the first month or so. But either way it will be helping your body to heal because it will be reducing inflammation and helping to build back up the gut lining too!
You can always here and there show nice meal ideas.its great to kniw what to eat and what not but putting it together stays a challenge.new ideas are always cool
Who'd get a desease during a pandemic? Wow it's a mess out there. Here in Leeds Ive been waiting for three months to even see an MS neuro, Dispite pushing for the Anti Mog tests to be done in the mean time I think I'll be pushed back while we wait for the results of those before picking treatments. Keep going positivity is what I need right now as all I have is letters.
I Know right!! The whole system seems in a mess, all my appointments at the minute keep getting pushed back, despite being told months ago my case was urgent and needed to get on DMT's ASAP... Very frustrating but I am just keeping positive and doing everything on the diet and lifestyle side of things to stay as healthy as possible and to try and keep it at bay!
I understand delays in the nhs. But delays due to self inflicted lack or urgency is infuriating. I’m seeing neurologist Wednesday. He might not enjoy the experience! Time is not something people have and delaying is not in the patients interests.
@@mikesimmonds1916 Yes I think I'm similarly going to have a stern word or two when I next see my neurologist... Whenever the hell that is going to be!! I've emailed his secretary a few times and she has been passing on my emails but am getting radio silence back. So frustrating when it is life changing decisions waiting to be made!
Hi Tom! I was wondering how your thiamine research is going? I think it’s about the 4th week for me and I admit to messing up my diet and missing a couple of days of thiamine protocol. However, despite this I am truly impressed by my experience. The days when my compliance is good my energy levels are noticeably better. I am back at the pool and can very slowly do 4 lengths on average. Could barely get across from my bedroom to bathroom before on most days. My palpitations, breathlessness and balance problems, tinnitus and cognition deficit all return immediately when I miss doses. I still have the occasional memory lapse but nothing like before Xmas when I was convinced I was developing dementia. I do still. have slight tremor and muscle twitching but barely perceptible. Obviously I don’t know to what degree, if any, I’ll achieve demyelination of brain and spinal cord and only MRI and X-ray will reveal that at some future time. I am hopeful. Meanwhile, I continue to enjoy the positive relief so far. I’d love to know if anyone else is trying thiamine protocol.
Hi Jenny! I haven't got very far with it after having a busy holiday period but I definitely will be looking into it further soon and getting some thiamine supplements! That's great though the benefits that you have seen when you show strong compliance so there must be merit there. But yes similarly I would love to find out if anyone else is trying it out. I think when I know enough about it I will do a video on it and that should invite people to add their thoughts and opinions and if they have tried it.
@@tomgarbett77 Brilliant! That sounds really helpful because I’m kinda mindful of placebo effect and although I think the mind plays a powerful role in healing, I don’t want to be self-duped or give false hope to anyone. Glad you had a good holiday.
Tysabri worked for me… but when Tecfidera came out several years ago… I switched to that… 1 pill twice daily… Used to have 4-6 relapses a year… now I haven’t had one in the past 7 years… and Tecfidera has only symptoms if you don’t take it with food…
Wow that's awesome that you've gone from regular relapses to none in 7 years! It is looking like it will be Ocrevus for me, but I am hoping I will ave a similar positive reaction as you have to the treatment. Are you making any other lifestyle changes to help combat the MS at all, or do you put it purely down to the treatment that you have improved dramatically?
![Resilience in the Face of Multiple Sclerosis Audiobook Narrator Discussion/Interview [Daniel Pagone]](http://i.ytimg.com/vi/tSYXarEfETQ/mqdefault.jpg)
I picked Tysabri straight off as it didn't compromise my immune system. I tested positive for the JC virus so my neurologist reccomended Ocrevus as Lemtrada was too risky with 3 children at school. I started Ocrevus in September and its going OK. I was very weak and tired for a weeks after my second infusion but I'm doing good now. Good luck with whatever treatment you pick 🍀
Hi Susan, thanks for letting me know about your experience, it is really useful in helping me decide! It is looking likely for me that it will be Ocrevus, although I am keen to do Lemtrada as even though it has the most side effects, in my opinion it seems to have the best chance of long term remission. But Tysabri and Ocrevus aren't far behind so whatever I choose I am optimistic I will have good results. Thanks for the kind words and hoping that Ocrevus keeps working for you!
I'm currently waiting to hear back on my diagnosis to understand the different treatment options. Internet can be scary place to research- so I appreciate the informative breakdown!
Hey Makda glad my video was useful! But yes there’s a lot of scary stuff out there so just gotta focus on what’s important and stay positive! Do let me know what you decide to go on and how it goes!
@@tomgarbett77 Will do! In your previous video you mentioned changing up your diet significantly. Have you found that to be helpful in your symptom management?
@@makda4407 Yes, I have gone on the Best Bed Diet since February and all of my symptoms have either gone completely or lessened dramatically! SO for me the diet definitely has contributed to this and I am hopeful that it will help to keep the disease at bay. So I would definitely recommend you looking into because I have heard of so many success stories of people on the diet as well!
@@tomgarbett77 Thank you! I looked into the diet after watching your video a week ago and I've already noticed a difference in my energy levels and some reduction in my symptoms. My symptoms are primarily numbness in fingers, vibration/heaviness through the legs, pain in the neck, headache and balance issues. How long would you say it took after making the changes for you to see significant changes? I'm sure it's different for everyone but it's good to have a baseline!
@@makda4407 Ah that is brilliant that you've noticed a reduction already in symptoms! What diet are you trying? It's hard to say with me because I had two relapses and one brought on all sorts of sensory issues, but that big relapse was in April and now I've been 100% for a good couple of months I would say, but I would say I was 90% better within the first month or so. But either way it will be helping your body to heal because it will be reducing inflammation and helping to build back up the gut lining too!
You can always here and there show nice meal ideas.its great to kniw what to eat and what not but putting it together stays a challenge.new ideas are always cool
Thanks for the feedback! I will definitely start doing that I think that's a great idea, to share some meal ideas!
Who'd get a desease during a pandemic? Wow it's a mess out there. Here in Leeds Ive been waiting for three months to even see an MS neuro, Dispite pushing for the Anti Mog tests to be done in the mean time I think I'll be pushed back while we wait for the results of those before picking treatments. Keep going positivity is what I need right now as all I have is letters.
I Know right!! The whole system seems in a mess, all my appointments at the minute keep getting pushed back, despite being told months ago my case was urgent and needed to get on DMT's ASAP... Very frustrating but I am just keeping positive and doing everything on the diet and lifestyle side of things to stay as healthy as possible and to try and keep it at bay!
I understand delays in the nhs. But delays due to self inflicted lack or urgency is infuriating. I’m seeing neurologist Wednesday. He might not enjoy the experience! Time is not something people have and delaying is not in the patients interests.
@@mikesimmonds1916 Yes I think I'm similarly going to have a stern word or two when I next see my neurologist... Whenever the hell that is going to be!! I've emailed his secretary a few times and she has been passing on my emails but am getting radio silence back. So frustrating when it is life changing decisions waiting to be made!
Hi Tom! I was wondering how your thiamine research is going? I think it’s about the 4th week for me and I admit to messing up my diet and missing a couple of days of thiamine protocol. However, despite this I am truly impressed by my experience. The days when my compliance is good my energy levels are noticeably better. I am back at the pool and can very slowly do 4 lengths on average. Could barely get across from my bedroom to bathroom before on most days. My palpitations, breathlessness and balance problems, tinnitus and cognition deficit all return immediately when I miss doses. I still have the occasional memory lapse but nothing like before Xmas when I was convinced I was developing dementia. I do still. have slight tremor and muscle twitching but barely perceptible. Obviously I don’t know to what degree, if any, I’ll achieve demyelination of brain and spinal cord and only MRI and X-ray will reveal that at some future time. I am hopeful. Meanwhile, I continue to enjoy the positive relief so far. I’d love to know if anyone else is trying thiamine protocol.
Hi Jenny! I haven't got very far with it after having a busy holiday period but I definitely will be looking into it further soon and getting some thiamine supplements! That's great though the benefits that you have seen when you show strong compliance so there must be merit there. But yes similarly I would love to find out if anyone else is trying it out. I think when I know enough about it I will do a video on it and that should invite people to add their thoughts and opinions and if they have tried it.
@@tomgarbett77 Brilliant! That sounds really helpful because I’m kinda mindful of placebo effect and although I think the mind plays a powerful role in healing, I don’t want to be self-duped or give false hope to anyone. Glad you had a good holiday.
Tysabri worked for me… but when Tecfidera came out several years ago… I switched to that… 1 pill twice daily…
Used to have 4-6 relapses a year… now I haven’t had one in the past 7 years… and Tecfidera has only symptoms if you don’t take it with food…
Wow that's awesome that you've gone from regular relapses to none in 7 years! It is looking like it will be Ocrevus for me, but I am hoping I will ave a similar positive reaction as you have to the treatment. Are you making any other lifestyle changes to help combat the MS at all, or do you put it purely down to the treatment that you have improved dramatically?
Whats about Mavenclad ?