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Not what I wanted to hear...
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- Опубліковано 4 сер 2024
- In today's video I wanted to share with you my recent MRI results. I have not had the full explanation yet from my neurologist but this is what my MS nurse told me.
Let me know in the comments if you have had any MRI's that shocked you (good or bad) as I would love to hear how other people have dealt with all the ups and downs.
Song used: open.spotify.com/track/21yzEW...
Your mental strength will overcome your physical blips my man. Keep driving and believing. Your a massive influence on anybody that hasn’t been blessed with a “perfect physical existence”. But my goodness you are the perfect example for anybody that unfortunately has a disease to deal with.
Hats off to you man. Your amazing!
So sorry about your results Tom! Sending all the love, hope you get more clarity from your neurologist.
Thanks Isabella, appreciate the kind words! Just really need that clarity now, feel like I've been left hanging!
Hello Tom, I understand your disappointment but you need to think that it takes a long time for the medication to work. It is on the long term that you will see positive effects. You may also have some lesions but they may not affect your well being as it seems has occurred to you. Keep going and give it time. I have discovered that the body also has an unbelievable ability to repair itself to a certain length and all you have done so far is surely paying off in terms of symptoms not worsening. You appear very healthy, I am not sure if you have pain or weakness or brain fog. Let me know. If you are available for a chat , I can call you and share experience
It was definitely still worth doing everything you're doing. My next appointments in January, I won't get my hopes up for my MRI results because I have new symptoms but it could have been worse and I'm still hopeful for the future and doing whatever I can do. Take care of yourself 😊
Thanks Kitty for the words of encouragement! But yes I think either way what I have been doing can only have made a positive impact. But yes keep up that positive outlook!
Hi again!! Sorry to hear and I can always relate to your journey as it is similar to mine! Stay positive and stay connected as you are my MS buddy thru your channel! Kerry
Ah that's great Kerry! We've got to stay together and keep supporting one another, even digitally! Haha.
Sorry to hear that Tom. I also had activity in my MRI after being on Interferon for a year. I started few life style changes. My neurologist also switched to Tecfidera instead of the Avonex...hope it works. I also have revisiting symptoms like hand numbness and back and neck pain that could be related to my spinal lesion or else to other vertebral column issue I am not sure ...still investigating though. Please keep us updated and let us know about your doctor appointment, I hope it goes well.
Thanks for the kind words and hopefully your new lifestyle changes and the switch in therapy will do the trick for you! What are the lifestyle changes you have made out of interest?
@@tomgarbett77 I go to the gym regularly now (a year now) and I try to keep enough fixed sleeping hours. I am also trying to eat healthy food as much as I can. Food has been a very.confusing issue for me since my diagnosis, as I read about lots of diets. I followed Wahl's protocol when I was first diagnosed but it seemed too harsh for my body and I wasn't able to continue. I now try to eat just healthy balanced food as much as I can. I don't eat particularly any kind of fatty cheese or processed meat. Still exploring though!
All the best to you. Stay optimistic, strong and motivated. There is nothing wrong with wishful thinking. It certainly beats the opposite of being pessimistic, down, depressed. Keep doing what you're doing at the very least it gives you some control over MS and there are other health benefits. looking at your past videos I think we are doing similar things. If I was told tomorrow things we are doing don’t work, I would continue doing them. This is now my lifestyle. I did have an MRI six months after starting Ocrevus and there no new lesions or activity. Prior to that MRI mineralogist did tell me not to be disappointed if there was some activity because I was on my first round of Ocrevus.
Thanks for the constructive words. I agree in that I think I would still continue going about my life the way I do now, even if I was told it had zero effect, which just goes to show how it was the right decision to do so. But yes I agree, I think I am being slightly overreactive and overly optimistic. And it seemed as though my disease was highly active when I started the diet etc and the scan they are comparing to, was only 2 months into starting the diet and so many of the 'changes' on the scan may well have came from over the next few months where my lifestyle changes wouldn't have had time to take effect. It does sound like we are in very similar stages also! Wishing you all the best.
@@tomgarbett77 Similar and different, we are in different life stages I am 58, was 57 when I was diagnosed. I have been health conscious my entire life, my mother died at 65 from Parkinson's so I am not a stranger to neurological disease. I have also been in the gym and actively into sports my entire life. I won't let MS change that (I may have to modify things, my wife is always telling me to slow down). like you, when I was diagnosed my MS, was highly active. One of my neurologists was very concerned that it was super aggressive but my other neurologist said I likely have had MS for many years. I had active lesions on my brain, spine, and neck. Looking back, I think I have had MS for many years But I was either reckless or in denial. I don't think you were being overly optimistic, Never Lose Your Optimism mindset is everything. Live your best life every day. New meds, new discoveries, hopefully in your lifetime they will find a cure or a way to put MS in remission
@@forkums Ah right. Yes it does sound like perhaps you have had it much longer. I think I can trace mine back to when I was a teenager and I would have dizzy spells, but then no other symptoms for another decade or so! Strange disease, but I do think exercising is one of the best things we can do. If we are constantly pushing our bodies and forcing our nervous system to adapt then that can only help with the rehabilitation of damaged myelin in my opinion. So I would definitely suggest not to slow down for as long as you can! And yes I am certainly keeping optimistic and am sure there will be a way for long term remission in the not so distant future... simply because there are so many people with MS now that there is so much money in it for big pharma to bring out the best drugs!
@@tomgarbett77 I will keep following you to see your progress all he best.
@@forkums Likewise, I have just subscribed to your channel! All the best!
Please stay positive; feeling good and knowing the most important things are there!. Keep searching for this way to enjoy the journey.
Thank you! Appreciate the kind words!
Sorry it wasn’t the news you were expecting to hear, don’t be too disappointed wait to hear what the neurologist has to say about it. You are doing amazing and thank you for sharing your journey with us.
Hi Kathy, thanks for the kind words! But yes I do need to wait to speak to the neuro you're right and in the meantime keep positive!
I'm so sorry to hear that. But I'm sure you will be able to put the lesions in remission by the next MRI. I had active lesions until the most recent scan when the changes in lifestyle didn't show anymore lesions.
Thank you! But yes I am hopeful that the activity might not have been so bad and am sure that the most of it would have been around the time I was first diagnosed, when I was having a lot of symptoms. That's great news though that your lesions have improved!
Hey Bro, keep doing what you're doing. Essentially you're buying yourself time. In the not to distant future this disease will be as boring as a wet fart (well some times they can be exciting lol). They'll figure it out! And as much as it's great to be positive, remember it's ok not to be, so make sure you absorb those down days and use them as fuel. Much love!
Haha thanks Richard, appreciate the kind words! But yes that’s certainly the way I’m seeing it, and I’ve been getting down about it but realistically I haven’t had any new physical symptoms in well over a year, so something I’m doing must be working to some extent!
@@tomgarbett77 it's hard, because you can easily question what you're doing etc, 'oh it isn't working' 'what's the point' etc but you can only control the controllables, and you can always flip it.... imagine yourself in a parallel universe that hadn't tried as hard as you and they were in a slightly worse off position health wise. Then your efforts now seem more valued and worth the hard work you're putting in. You can't change the past, you'll never really know if you're changing your future self but the belief that you are helps you get through today.
@@Durace11Bunny Yes exactly I completely agree with you and that is how I think 95% of the time. Just have the occasional slip up where I feel down and out, but you're completely right!
Im sorry to hear that Tom :/ It is a gut wrenching feeling. My most recent MRI 4 months ago also had activity sadly, it is what led to my "official" diagnosis with one new lesion. Although I was expecting confirmation it was rough to hear. Now on vumerity/tecfidera and hope it works. Although from what i've read it isn't nearly as effective as Ocrevus. I would have liked ocrevus but in the netherlands they start you out on a lower drug... Still on the old escalation model here - feels bizarrem, i have to wait around till i get more brain damage before taking something better :/ Also sticking to trying to stay healthy though and fingers crossed that the meds work for the both of us long term :)
Thanks for the kind words! But yes it is a weird feeling when you officially get diagnosed even though you know in yourself that you have MS. But yes luckily here in UK they now go for harder hitting therapies straight away which will hopefully help to clear it up by my next MRI. Hopefully though also your treatment does the job for you. It appears different treatments respond to different people so it's always hard to tell! But yes thanks for the comment, really appreciate your input. We can do this!
@@tomgarbett77 thank you for your transparency, it takes a lot of strength to talk about it so openly. Mhmm indeed hoping I respond, although I have heard it can take up to a year to be fully effective sadly. Will be keeping the finger on the pulse and escalate as soon as I can if things stay active :) Monitoring it and staying healthy is the best we can do, we can definitely do this!
@@__Wanderer yea definitely we’ve got to do all we can and only worry about things we can control is what I always say, which means looking after ourselves, eating well, sleeping well etc! :)
Sorry it wasn't better news Tom, but keep taking exquisite care of yourself. The diet and lifestyle changes will help you and your MS progression in the long run.
Thank you! But yes that’s exactly how I’m seeing it, who knows how bad it might’ve been had I not done anything about it! Wishing you well also.
@@tomgarbett77 right?!?
Its good to hear that you got no new symptoms .My MRI is scheduled in January. I hope results will be satisfactory. Rightnow I am taking no drugs. NEUROLOGIST decided to wait for the new MRI. drugs will be decided after new MRI results.
That sounds great, hopefully your MRI comes back clean! Are you doing anything yourself to keep the disease under control?
diet changes and few supps
Sorry to hear that man but I’m glad you have no new symptoms. You might have to wait till the next MRI to truly know if things are improving. Do you also do it twice a year?
Yeah cheers Paul. I am thinking that there was well over a year gap in between MRI's so it probably was to be expected but still disappointing obviously. Unfortunately I seem to have them yearly if that. Do you have two a year?
@@tomgarbett77 Yeah, twice a year. Next month will be my 4th MRI of 2022 but just because they wanted to confirm I had so many relapses so close to each other. Thankfully I haven’t had a relapse in 4 months with Ocrevus and no symptoms anymore but I’m curious what the MRI will look like.
@@Paul9735 ah right. But yes let me know what your next MRI looks like I’d be intrigued if you have a similar situation to me or not when you have no new symptoms but more activity on the mri.
I'm 22 years old, I was diagnosed with MS 2 years ago, I don't want to be disabled, what should I do?
Hi Tom.
Been watching your videos.
I do far too much googling for every illness, especially when suffering with anxiety too.
Ive been getting a few symptoms, like burning, numbness, crawling skin feeling and tingles. But have been told by the docs that's it's meralgia paresthetica. A condition of a compressed nerve. I have a lot of nerve pain in shoulder and leg from siatica and a pinched nerve in shoulder from a old dislocation, but these numb tingling and burning feeling in the thighs and legs has been there for quiet some years now.
It seems very hard to get help and be looked at.
I think the anxiety and worry make it a whole lot worse
Graham.
Hi Graham. Sorry to hear the situation you are in! I think a lot of us MS’ers have been in a similar position of misdiagnosis so it is important to keep pushing if you don’t feel like things are right and that there is more than meets the eye. That way you can get a diagnosis, move on and do what you can to tackle whatever hurdles come your way! Wishing you all the best.
Hi Tom just want say sometimes in first few years the MRI come out this way but later will get better you will see difference after two or three years .With right medicine as well Your appointment to far away for neurologist you have discusse this with him
Thanks Juliette. Yes I think you're right and it will be the case, I've just got to ride the storm for now. Even though I actually feel great, which is obviously more important than the MRI's anyway! But yes I am frustrated at how long I have to wait to speak to my neurologist! That's the NHS for you.
Tom things will get better MS not what used to be lot medicine out there and alot knowledge even here it is genetics MRi are always like that beginning then get better in time Your doing wonderful Keep up those holidays in sun 🌞
You had an MRI back in July, and they're only giving you the results now?
Yes and that was only because I pushed my MS nurse for him to discuss with me... My appointment with my neurologist isn't until February! Crazy really how slow it is
Do you have any new symptoms though Tom?
No I don't have any new symptoms, which is obviously great. I am guessing without the full explanation this is likely down to the fact he said none of them were in the brainstem or cerabellum so that would explain why I have had no physical symptoms. Which I am taking as a positive of course, because I know a lot of people speak of going off how you feel rather than off the MRI's.
@@tomgarbett77 That's great news! You're correct regarding MRI's not telling the full story, I was in touch with a woman who had clear MRI's and no new lesions and yet her symptoms worsened significantly
@@beastywild yes I know the diet I am on the best bet diet, those guys all recommend going off how you feel rather than the MRI’s because of similar to what you are saying they don’t tell the whole picture a lot of the time. So yes your comment has encouraged me to worry a little less about the MRI!
Keep going-early doors 😊