Multiple Sclerosis 15 Years On
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- Опубліковано 29 вер 2024
- I finally got my MRI results from April's scan after a long time on Lemtrada and today in this video I'm going to share what they are.
MS is an unpredictable disease and in my experience of talking to others that have the condition, everyone has a different experience. It doesn't mean that we can't share our stories with each other and exchange information as that is what helps us to feel supported.
It's been such a long time going in and out of hospitals (13 years in total) something I never expected at the age of 27, I'm extremely grateful for my treatment, however now I'd like to take a step back and enjoy my life without the constant reminders of MS.
#multiplesclerosis #lemtrada #msawareness
Good to hear your update. I had a MRI again after 12 years and had no new lesions, old ones hadn't changed, normal brain volume loss for my age, 66. Still have it though. No real flare ups just gradual slowing of abilities, could just be getting older.. I don't take any MS meds, just for symptoms like spasms. Haven't been able to walk for about 18 years now and found life is more than walking. Life is so good.
What a lovely positive message, thank you for sharing 🧡
Hello ladies. Im in California. USA. So hapyy that i found your channel Laura. I was diagnosed 6 yrs ago. Glad to hear you're all doing good. I feel like there is not enough awareness about MS. Please take care❤
@terejuarez4111 Thank you very much, hope you are doing well too
Hi Laura, thanks for the video. Do you have a twin sister? I wanna marry her 😅😅😅 all the best for you, pretty ❤
You're welcome 🙌.. No I don't have a twin sister 😊😂
I love when people say you "don't" look like you have MS...what does MS look like is my response. It's an invisible illness till it's not.
You're right! What does MS look like? - maybe they have the answers.. Do you know, I would never say that to someone. Good response, I'll remember that for the next time.
thank you for sharing your realistic and lived experience. i am 'newly diagnosed' 2.5 years ago. as a lady who was diagnosed 25 years ago said to me "there is life after MS" 💪🙌💓
Good Morning and you're very welcome. You may only be 'newly diagnosed' but the earlier days can be some of the toughest times so don't underestimate how hard going things can be. Stay strong, remain positive and headstrong and you'll do good. There absolutely can be life after MS and since my diagnosis I've probably made conscious decisions to do more and make the most of everything. Good luck on your journey 🍀🧡
Thank you so much for your sharing. It means so much to me. I have Ms and just diagnosed 2023. Thank you so much.
You're welcome 🧡
🧡 💪🏼🎗️ you are an amazing MS warrior, you continue to be a positive light through this journey MS places on. Thank you for sharing your journey and providing helpful tips. sending ❤ 💫🕊️ ❤️🩹 healing energy, love, strength and light.
What a beautiful message to wake up to. Thanks so much 🧡
That's great!! MS strong 💪🏼 🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡
Thank you 🙌🧡
I finally watched the video...8 lesions from 20...that's a really great result. That would seem to show the treatment has worked fairly well. I have had ms for 39 years plus...have never had it treated and an MRI from a few months ago (4th) is showing no lesions on my spine...mild brain atrophy, and several multi centimeter lesions on parts of the brain and moderate demylination of the optic nerve. Code is G35. So who wins? Hard to say...I guess it depends on how you look at it. Hey...have you ever considered resetting your immune system? Pain in the butt apparently...but some have claimed it cured their ms. Decisions decisions...
Hey! Yes I agree I think it's predominantly the treatment which has worked fairly well. You sound like you're doing great especially for not having any treatment for your MS. Was that out of choice or was there not as many options available when you were first diagnosed? I'm pretty sure that the campath reset my immune system! In fact I think it totally wipe it out then reset it. But what other ways are there to do this? This week I've been feeling very bad with my MS, stiff neck, constant headaches, fatigue. Not experienced the stiff neck before and these headaches are driving me insane. Who Knowsley what's going on inside the head! Hope you're keeping well.
I'm glad the results were positive.👌
Thanks Tony 😊
This was such a positive video, you have such a lovely mindset! I got diagnosed almost 2 years ago now (I'm also sharing my story on Kesimpta on my channel). Thank you for being such a positive light, I think keeping track of your MS over the years is really beneficial, especially going from 20 to 8 lesions - that's such a good motivator to keep going!! xxx
Thank you very much 😊
Brilliant news Laura! I think we all have our own journey and you must do what's best for you. I am the same with my MS its part of me now but I cannot make it the foxus of my life. Luckily, I dont have to. 2 years in after originally being diagnosed with TM, was told it's 'MS... albeit at the benign end of the scale'. So onwards and forwards. Your videos have been very helpful. Thank you for all you do!
Hi Jane thanks so much for your kind words. I can't believe you had to wait that long for a confirmed diagnosis! Um but welcome to the MS club in the kindest possible way meant. I'm sure you find that there's nothing but support out there as that has been my experience so far.
I'm so pleased my videos have been helpful, but there's no point posting videos without people who are interested in watching, so thank you for your support too 🤗🧡
You’re a bright light in this ms world Laura. Very happy for you about the mri results. I totally understand not wanting to have anymore!
Thank you very much Karen 🧡
What is Campath how often do you take it hun? And can I ask for ? And congratulations that’s ur mri come back good xxx
Hi, I've made quite a few videos in my playlists, as they will probably explain my treatment better. It's under Lemtrada as that's what campath is. I started the treatment in 2009 and finished in 2010 as its only 1 infusion once a year and nothing after that (unless you relapse quickly) so that's why I loved it as once your done your done and I've been treatment free since 2010 and on nothing since. Thanks so much. Are you thinking of going onto treatment? X
@@lauraironstalksms thankyou so much for your quick reply really appreciate it honestly and I’m yet to be diagnosed There waiting to see if I get another lesion on the next mri but ino I got it so do they to be honest so I was wondering what your treatment was I’m gonna try this one if I have but so scared as I’ve got A year old that ima die soon from it I’m a mess I’m so depressed
Hi, I was just wondering how you are and if you got a diagnosis? @@Tarotbydanni
Keep up the positive attitude Laura, we need it 💪
Thanks Tony 🧡🙌
HELLO BEAUTIFUL!!!
I'm so glad to hear the great news regarding your last MRI.
I totally understand you about future MRI, especially after 15years. My last visit with my neurologist a couple months ago I was told that because evey MRI I had since 2020 has been stable with some lesions slightly diminishing, that I would only need get one MRI a year instead of two. For a while I was thinking that they were trying to permanently turn me in to a glowing magnet.😂
I'm still going to continue with the Ocrevus treatments every 6 months for the time being, on my next visit with my neurologist Im going to ask her what she thinks about me ditching the Baclofen that I'm taking 3x a day just to see how I get on without it. I'm reminded pretty much ever day that I have MS and that I'll aways have MS but as you said, "It is what it is." So lets just live our best life possible.
Thanks again Laura for your videos. For what it worth they helped me get passed a couple of rough years after my official diagnosis.🙏
STAY GORGEOUS!!! 😘
HELLO 😊👋 So nice to hear from you as always. Oh what great news also about your scans being stable and that some lesions deminishing, it's the results you want to see. Of course, yes I've heard a lot of good things about ocrevus from my friends who are taking this, I hope too that it's having positive effects for you and your MS. What are you taking the baclofen for along side the ocrevus? I think daily reminders are harder, 6 months is do-able. I liked the campath for that reason as it was two infusions once a year for two years, then done - it was the monthly check ups which were quite rigorous. Definitely do what you feel is right.
Thank you so much and for what it's worth also, your help and support throughout this channel has been extremely helpful to me. Always lovely to see your name pop up, one of my very first watchers, thank you so much 🤗🧡🌳
@lauraironstalksms Just to answer your question, I was given low doses of Baclofen to help with the spasticity in my legs. To be honest, it just helps a little bit. Who knows what it's doing to my body long term. I guess I won't be running any marathons or climbing any mountains. 😆
Morning all,
Q? Did anyone with MS had knee buckling as a symptom
Cant stand on tip toes or on heels
Due to weakness and balance issues
Regards in advance
Morning Kevin, I haven't had experience of this I'm afraid. I hope someone in the community can get back to you on this
I'm having all of those along a few other, neurologist says they are looking into ms, I've just had my mri on Friday just gone, just got to do nerve test and hopefully a decision will be made, I have lost ankle reflexs and foot drop and having a few problems with hands too, ask your doctor for referral to a neurologist, take care.
@@HappyNana05 hopefully mri comes back clean and zero lesions
And Drs get to bottom of your symptoms
I think it's important you do scans and report on them, not just for yourself but others that are going through the same thing. I understand it's hard and scary, but what is the meaning of these things we're going through if not to help other people? Maybe I'm a bit projecting, a bit 😊
Hey, yes I totally understand what you're saying 😊. It is important I agree, it's not really a case of it being hard or scary, I don't feel that way about it at all. I'm not saying that I won't ever have another MRI, just maybe not so frequently. I will still be here to update on my MS and I'll do this until I'm 90 😉. For now, the plan is no MRI next year and I'll see how I go inbetween then.
I was diagnosed with PPMS about 18 years ago, I haven't bothered with seeing any Neurologist's, or having any more MRI scans or anything else ever since then..I really couldn't see any point once I found out they had no cure to offer. I have tested out things like the Wahls diet without any noticeable changes, I have also been going through the entire list of vitamins and supplements' over the years to see if any particular one has any noticeable effect but so far I have found nothing...I am completely wheelchair bound now
Yes they have no cure, but they can halt the progression through DMT's, that was why I made the decision to go onto the CAMMS trial back in 2009. However.... Now these slowly expanding lesions / smouldering lesions are coming more to light and I'm thinking more about this. Any number of my MRI scans could have come back with "no signs of any new lesions, no enhancing lesions" etc but this is no good to me if actually underneath it all the MS is progressing anyway! I say look after yourself as best as you can holistically, because if the disease is going to progress, it's going to progress and unfortunately there's not much we can do about it.
But.... I am sorry to hear that your MS has progressed that far for you. Could I ask, what are you currently doing / trying?
Relapsed? You seem so normal!
Oh I'm far from normal.. 🙃😉
No one with MS is "normal". Hopefully one can understand this is not something we say.
Brain tumour Survivor and MS here.
@@MysticalDreamFire Yea...I'm quite aware of that. I've have had ms for quite awhile...since the summer of 1984. I've got one of the rare types where both my eyes & hearing are being damaged with a congested or "fullness" feeling in my ears also. My initial comment was figurative and not in a literal sense and made in the context...lets say of ms irons shopping and observed by other shoppers who were not aware of her situation would assume she was 'normal' like they are if they are. That's what 'seem' meant. If she was literally normal she would have not have been receiving her pip payments and this channel would not exist. You can take this post down if it upset you Laura...no sweat.
Hey, no-one or nothing has upset me, it takes a fair bit to do that I can tell you!
Everything is totally cool 😎👍
@@lauraironstalksms Oh for heavens sake...I had myself a little worry there for bit. Sorry...I'm hopeless. I hope things are as good as they can be with everything.