Finally have an update from the neurologist...
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- Опубліковано 4 сер 2024
- So have just received a letter from my neurologist explaining my recent MRI results. So I thought I would share this with you, after giving you an update from my MS Nurse, this is more the official line.
As you can see from the video I am much happier now with the further clarification from the neurologist!
Let me know in the comments below if you have any further ideas for future videos, as I would love to put them together for you, to help others suffering with Multiple Sclerosis and other autoimmune conditions.
Really happy for you. 🙏
Ahh good to hear from you again! And thank you so much, long may it continue!
Thank you Tom....in going be diagnose but I know I have MS ....I would love to see your vlogs....and see what changes I can make to help me out ...
Hi Maham, good to hear from you! But that's great I will get those videos out soon, because I would love to be able to help you if you do indeed get diagnosed like you suspect. All the best!
So happy for you
Great news. I had a MRI of my brain in August of this year, had naot had one since 2012 and my neurologist and I surprised that there a MRI small change in one lesion. I haven't taken any MS treatment since 2013. My main problem was/is my spinal cord lesions. Didn't have MRI on it. Haven't really done anything but relax and live a grateful stress free life.
Ah amazing that's great to hear! I think it can be the way with some people that if whatever was knocking them out of balance before has been removed, whether that be stress, then the disease will settle / go away. What kind of diet do you have?
So happy for you! Keep going! I am 15+ years in and doing well!
Thank you so much for the kind words! That’s great to hear you are doing well too! We can do this 👊🏻
Awesome 👍👍
Thank you!
Great news! 😊
Thank you my friend!
Yay!!! Awesome news! Kerry
Thanks Kerry! Appreciate the support!
This is wonderful news Tom Your back in action Have a Happy Holiday season 🌺
Thanks Juliette! You too ☺️
Great news, that sounds very positive 🙂
Thanks Kathy, I’m really happy with the news ☺️
Amazing news! Keep up the videos, they are certainly inspiring for me! 👍🏼
Awesome! So glad they are inspiring you! Are you a fellow MSer?
@@tomgarbett77 Hi Tom, yes a fellow MSer on a similar journey to yours. I just literally started my Ocrevus infusion and had my second dose last week. So far no particular issues. Although I am a lot older than you at 48. I was diagnosed back in 2011 and have not been on any medication since 2015 when I decided to deal with it through exercise and diet. However, last year I had optic neuritis and lost sight in my left eye. The neurologist suggested that I start treatment and gave a couple of options. After much research and watching your Ocrevus videos I decided to take the plunge. So will see how it takes shape in the coming months I guess. How have you been?
Wonderful news! Hope you get even more clarity by speaking to your neurologist face to face. I've just got my scan results after 1 year of diagnosis and nothing has changed, so I'm super happy about that. I'm also in the process of changing from Tecfidera to Tysabri because I have some pretty bad flushing as a side effect, so hoping the transitions runs smoothly. Great to hear you're doing well and I would love a day in the life type video! All the best
Thanks Isabela! But yes, looking forward to the face to face meeting now. That's great news that you have an unchanged MRI! Are you doing anything yourself to tackle MS or are you putting that down to the DMT's? Bodes well as well because Tysabri in general is considered much higher efficacy than Tecfidera.
@@tomgarbett77 I try to eat as healthy as possible and hit the gym between 4-5 times a week, but other than that not much has changed. I listen to my body as much as I can but I've been very fortunate to not have any recurring symptoms. Also yes, very happy to be changing meds due to the efficacy!
I was diagnosed 2 years ago and I am still confused as to what is actually happening or supposed to happen. I understand the particulars but with the lack of follow up after my Rituximab infusion treatments..I have had 3 so far. I feel good for the most part but have really learned most of what I know from what people share…so I just want to thank you for sharing your journey and look forward to you day in the life video….
Hi Jeff, thanks for the kind words and yes I agree it really can be a bit confusing and you can feel lost, which is why I wanted to share these videos so that we can help each other! And yes the day in the life vlog will be coming soon!
Amazing news Tom :) Congratulations👏 - must be a big relief / vindicating feeling :) Having my next scan in Jan next year 😅 My nurse was definitely a lot worse than my neuro. I was supposed to receive information on treatment from him but he went on holiday for 6 weeks just after I was initially diagnosed, nobody took over the case and I ended up having to try to figure out which medicines were available in NL xD Long story short: don't trust my nurse at all. Currently on tecfidera / vumerity so really hope it's working its magic. Otherwise I would like to swap to ocrevus asap, in NL they also don't allow Ocrevus as a first treatment...
Thank you! But yes it was a great feeling to read that, although a little confusing initially following on from my nurses comments! But yes it sounds as though maybe we shouldn't trust our MS nurses too much! But yes hopefully Tecfeidera / vumerity is working for you! Odd that they wouldn't let you go on Ocrevus as first line because I could. But I know that different regions have different protocols! Thanks for the support!
Delighted to hear Tom. Been following your journey from the start, have my MRI in February, please God it goes well. I've been following the Wahls protocol and other lifestyle changes so hoping it'll work for me
Yes hoping yours goes well! How have you found the Wahls protocol? But yes I'm sure either way the changes you have made will be benefitting your MS, it's just good to get some confirmation from the MRI which is what I was hoping to see! :)
@@tomgarbett77 I'm starting to enjoy the diet and have found there are still lots of ways you can still have tasty and delicious food and treats that are healthy. I'm similar to you, 30 year old guy in Ireland just doing everything I can to beat this and so far so good. I watched my mother suffer with Progressive MS from a young age when there wasn't really any good DMT's and she had no knowledge of healthy diets, lifestyle etc. She fell into a depression and the disease ravaged her body, I saw her suffer terribly throughout the years as the disease ate her and she is now in a vegetative state. I've made a promise to her that I will fight this to the end, me and you may not know each other but we are in this battle together 😊
@@beastywild Wow I'm so sorry to hear about your Mum!! :( But yes, I'm sure it will have given you all the motivation you need to beat this disease! And you're right, we are in this together and we WILL beat it!
In the US it is the day after Thanksgiving. For me it is not a single day, I am giving thanks daily for the blessings I have in my life. I don't know you other than watching your videos. Even so, we are in together. You are close to my sons age, don't like to see a young person dealing with this but It appears you are handling it like a champ. Happy for you that the results are better than you first thought. Keep doing all the things you are doing. Off to watch the World Cup US vs England. I am getting my Ocrevous next week, ready to roll. Best to you and all with #MS
Thanks man appreciate it! But yes similarly you've just got to keep feeling grateful for everything that we do have every day! But yes I will similarly be watching the US vs England game right here in England, so on other sides of the pond and other sides of the support! May the best team win! Haha.
@@tomgarbett77 Can I Hear a Go USA 🤣
@@forkums It was quite an uneventful match in the end!
@@tomgarbett77 I thought it was fantastic. Went to a nice sports bar, it was packed, loud, & enthusiastic. That does not happen often in the US for soccer. 0-0 playing England is a win for the US. Surely England will advance, Great if both teams advance
@@tomgarbett77 My son could ball for a US kid
ua-cam.com/video/Lp4pHvfUmgI/v-deo.html
Great news Tom! We'll look forward to some lifestyle videos. Maybe do some videos unrelated to MS to show people that life goes on with it like hobby videos? Vlog some day trips, do you like certain places,foods, restaurants,cars,gadgets,films,books,gaming,gym etc.
Then related MS videos, do you know others you can have a conversation with. What impact has it had on friends and families, what do they know about MS? What are your life goals etc. Wish you all the best dude!
Thanks Richard, really appreciate those videos suggestions! Some great ideas there that I hadn’t even thought of/ thought would be a good watch for viewers! So thank you for that I will certainly be sharing some of those videos soon! Hope you’re doing good!
@@tomgarbett77 it's no problem. I'm all good here dude, had my 3rd Ocrevus infusion a couple weeks ago. My MS is pretty stable at the mo, so i'm very thankful. Where abouts in the UK are you from?
@@Durace11Bunny Ah that sounds good! But I am based in Manchester. What about you?
@@tomgarbett77 i'm Southampton mate, opposite end of the country lol