MS 15 Years On: The Big Question Did My Treatment Truly Work? 

30 years is a long time.. But you sound like you've got a fighting spirit so good on you. Wishing you all the best

Your awesome Andrew! Thx for the motivation💪 I am 55 years old -1 on Kesimpta & it’s helping so far…🙏

Hi All... RRMS here, age 24 till 51- began w Avonex injections, then Rebif & Betaseron; now nothing due to intolerance for the shots. I have mild symptoms- fatigue, gait, balance, cog fog but i still do dog care and daily walking- hearing all the experiences gives me so much hope- perhaps i should get back in the game since new med options are here now! thank you 🙏

Yay to the dog care 🙌🐶.. I think it's always good to have an open mind to it and have options there to consider. The DMD's are always evolving. I think one thing that I took from my last conversation with my neurologist was that MRI's seem to be the key focus on looking at lesion development / new activity. So regular MRI's I think are an important factor and consideration of a DMD. Good luck and keep walking those beautiful pooches.

Hi! Thank you. It's such an incredible shame when diagnosis is left too long, because I believe it could be the difference between a potentially much better outcome if its caught early and treated early. I agree, it really is important. Hope the lassy is getting all the support she needs.

Thank you, I guess everyone with MS is in this together in some way shape or form. Thanks for sharing your positivity through your videos too, keep up the great work 💪🧡

Hi 👋 Kesimpta.. I've heard snippets about the drug - I believe you have to inject it?! You were diagnosed years on from actual symptoms, that crazy, and you had brain surgery quite recently, that must have been through the Covid period? Lots going on for you but I'm so pleased that surgery went well, but not so great that you have extra issues to deal with. Yes, I have watched Dr Bosters videos and I know he speaks highly of this drug, I know Dr Brandon Beber did a video on it too which if you haven't watched is very interesting. Yes, always good to share amongst people. I think it just allows people to have access to soneone who's 'been through it' if that makes sense. Hugs back from a fellow ms'er 🧡

@@lauraironstalksms basically MS savedy life in 2021 when I had really bad Optic neritus and they finally did an MRI when they saw the huge brain tumor. Tumor and MS are interchangeable so I'm told. Haven't found anyone like me with this type of MS yet. And yup it was all during lockdowns. And surprisingly I haven't had Covid and plan on not. Ty for responding 🤗

You're a one off 🤗. Wow, you never think you hear much positive stuff around MS, your story is quite incredible but nonetheless you must have undoubtedly gone through such a difficult time. You're a fighter, keep it going 🧡💪

Hi🙋‍♀️on Kesimpta too for the past year & 2 months!! I feel so grateful to be on such a great drug & insurance & w/ Novartis I can handle this. Diagnosed a year age 55! Take very good care of myself.. sleep, yoga, exercise & keeping stress low. Love from Colo

Hi Lisa, oh our stories and timings sound quite similar! Sorry to hear that you've gone onto have more relapses and flares, it's really NOT something that you want to go through and especially on a regular basis - and that's the problem with MS it's so flippin unpredictable! In fact funnily enough this morning I woke up completely unbalanced and needed to do my epley maneuver exercises.. You never know from one day to the next what's going to happen. I absolutely don't blame you for not having treatment because of the side effects, it's scary! I think I was so much younger back then and I took more risks, but also I was really bad and I didn't want that to be my future. I think I was more scared of that option, than the thought of the side effects of the drugs - if that makes sense? However... Saying all of that. These drugs are now licenced and so now much safer because they have done years and years of research on them. Many of the side effects that occur can be caught and treated really early on. I also believe that once you're on the treatment programme, you are well monitored and looked after by your healthcare professional so things will be picked up. No-one ever knows what's around the corner, but life in my late 20's was scary when it was/is supposed to be exciting and getting up to all kinds of mischief 😂😜.. I didn't want that for myself, so I took the drugs and boy did I make up for it in my 30's 😊. I've calmed down a bit now in my 40's, but I want to keep well, because if my body and mind is well, I know I can continue to enjoy life. Who knows maybe I'll be like my Granny (who's fast approaching her 102'nd birthday!!) Whatever you decide in the future, it's got to be right for you. You'll know when it's right because one day you just won't question it 🧡🐕 x

@@lauraironstalksms sounds like you have been through the mill too, I don’t get angry about it anymore but it certainly effects your mental health that for sure. Thankyou for the video and message because I might just go back to neuro and ask a few more questions. I think we were all a bit wild when we were younger but I do think I’ve had this since I was young, my mum now remembers certain things from my childhood that connects it for sure. I hope you are as well as can be and the fur babies are great too. Speak soon. Keep the videos coming I love them! 😊

Yes, absolutely agree about the mental health side. That's one to be a constant work in progress. But with the great outdoors and furbabies what better way to combat it 😊. It's interesting about the connection with MS and childhood because I too have connections to make me think that I had it a lot younger too. I think talking things through with your neuro team will be a really good idea, treatments have massively changed, the ways they are administered etc and the safety aspects around them. But they are always the best people to go to. I'd be interested in hearing about it if you did ever decide. Ada and Flynn are great thanks, can't get her out of her beautiful blanket 🧡

@@lauraironstalksms I will keep you updated about the neuro and give those beautiful fur babies a hug for me because they are super sweet. Lisa x

Thank you 😊

Thanks to a fellow MS'er 🙏🧡

Thanks for posting Paul. Yes I think it's important to share these things with others especially when it's made such a big impact on my life. Thanks! I'm feeling OK at the moment.. Hope you are keeping well

@@lauraironstalksms Aw thanks Laura, bless you, I agree by you posting you are such an encouragement to others, but also for others to know they are not alone by seeing your posts.. Ive struggled (and still am) with tinnitus.. Laura could you message me on Insta as I would like to ask you about coping techniques and share my struggle a bit with you?.. Thanks Paul ❤️

Hi Paul, sorry to hear you've been struggling with your tinnitus again that's difficult. I'm on insta yes so you can get hold of me there

@@lauraironstalksms Aw Thankyou so much, I couldn't find you on Insta for some reason could you say hi on there so I can message you! ❤️

Hello. I agree, relapses aren't the worst thing, but in my opinion they are an important factor in the way RRMS progresses. My Grandad had progressive MS and very early on in his life had multiple, painful and disabling problems. He ended up in a wheelchair for the majority of the end of his life and passed away at the age of 65 (he was diagnosed at age 60) I'm 42, but not so far off his age when he started to present symptoms. I'm truly sorry for anyone going through this disease, I'm not trying to make these videos to exclude people with other types of MS, I do realise its completely different for some people. But I can only tell the story that I know, but I do care. The whole reason I'm doing these videos is to try and raise money for more MS research so that people don't have to go what they go through. At the end of the day, God knows where we will all be with our MS, I haven't got a clue. Like you said, the best outcome is to postpone it.

I had no choices in 37 and it's began very quick. I'm looking at a nursing home in my 40s and now I worry my kids will get it

Hello, so have you newly been diagnosed with MS? If the lesions are fairly new then you will have inflammation in your body which is why they have provided you with steroids. Hopefully, this will help to calm down the inflammation and will hopefully make your symptoms a little better and easier to deal with. With MS there is no time span on how long a relapse /flare can last so it is often a case of letting the symptoms just settle down with time. I would now be talking to your MS team or neurology team on what treatment plans you can start. The earlier treatment is started the better (in my opinion)

Good on you Mike, do you mind me asking if you've since relapsed since the treatment?

@@lauraironstalksms Yes...5 yrs after round 2, 2 new lesions, which qualified as per trial protocol new 3 day dosing. held for another 5 yrs and September 2020 all hell broke loose. Intense relapse. I was already in shock and crisis before that with my best friend died July and my father passing a month later. Trial doc became my neuro he switched me to Ocrevus. Been stable now a couple years. That attack was very intense numbness all over, pretty scary. I kept walking and working thank god. There were 2 of us that got accepted into trail at Mt. Sinai. It was a great experience and the best of the best doctors.

So sorry to hear about your friend and father 😔 They say shock and trauma can bring on a relapse. I can imagine that must have been a scary time. Great news that the Ocrevus is keeping you stable now, and at least you have a familiar neuro. Yes there were only 2 of us in the trial in 2009 in Cardiff, the other girls were on the trial previous to us. Fantastic doctors, nurses and people. Even though a unusual time, it was also one of my most memorable!

@@lauraironstalksms Thanks. I heard you say your not taking any ms drug since relapse 2019. Wondering why? Ocrevus is a little more manageable or Kesimpta. Listening to you sounds like maybe you should wondering your reasons for that

It's a little complicated and longwinded! But basically I had an arm issue which started pre covid pandemic, I was able to see my MS team about it when it initially started but they weren't concerned that it was a relapse (however I knew for sure it was a relapse as ALL the symptoms were present.) My arm got worse and excruciatingly painful within a short period of time but unfortunately we'd hit the beginning of the pandemic and Nobody was being seen. I was sort of 'left' with this arm problem for months and months until things gradually opened back up and I could be sent for MRIs. Both of my scans came back clear and my doctors kept saying they were unsure that I'd relapsed. I got sent for more tests to rule out carpel tunnel etc but those tests all came back negative. I had ultrasounds and they too were negative! They concluded in Aug 2020 (when my trial ended) that I probably had in fact had a MS relapse and should have therefore potentially had another treatment of campath... But it was too late. I also think that it may have been too late for the MRIs to pick anything up as it was almost a year after my initial attack that I had them. Whilst I was on the campath trial I wasn't able to go onto other treatment, but also there was so much uncertainty about whether I had actually relapsed or not! - in my notes today it's still not down as an official relapse - which is why I guess with all of that I never thought about other treatments. But my arm problem stole pretty much 3 years of my life and has changed everything as I can no longer work as a massage therapist because I have been left with neuropathic pain in my arm. You have made me think though, you relapsed after 5 years, me after 10. This drug is a preventative not a cure so now that I'm off the trial maybe you're right and I should now be looking at my options? I certainly want to keep relapse free as much as possible, and don't want to go though what I've just been through again. Thank you for opening up this question to me to explore.

So pleased for you 🧡

@@lauraironstalksms your voice is really calm , there aren't many "calm videos" on RU-vid you know. Now I eat more animal source fat. I don't know about dairy. Have you been following dairy free diet ? (Right now the only dairy I eat is sour yogurt )

@hydrogenneon Thank you, yes I like calm in my life. Too much chaos and raised Voices around. I like you went gluten free for about 8 months, to be honest I didn't see a huge change in the way I felt except from an improvement in my energy levels. I feel really great at the moment health wise, energy levels are good too. I think I put it down to the heights supplements as they have helped tremendously with my fatigue.

Hi Sue, hope you're well. You didn't mention in your message whether you have relapsed since starting your Rebif treatment? I had read up on both Rebif and Campath (Lemtrada) at the time I was due to go onto the trial because I knew those were my two choices. I wanted campath because I'd seen that In patients with early relapsing-remitting multiple sclerosis, alemtuzumab was more effective than Rebif but was associated with autoimmunity, most seriously manifesting as immune thrombocytopenic purpura. The study showed that The proportion of patients who remained relapse-free at 36 months was 52% for Rebif and 80% for campath. It also suggested that campath may reduce the amount of people who experience disability worsening and development of new T2 lesions on MRI. I have just read a snippet from some research carried out by Merck KGaA it says "researchers presented data from the randomized, multi-center Phase 3 IMPROVE study (NCT00441103) evaluating the effects of Rebif compared to placebo in patients with RRMS. In the IMPROVE study, patients were given 44 micrograms of Rebif three times a week, and underwent magnetic resonance imaging (MRI) scans every four weeks. Post-hoc analysis showed that the number of combined unique active lesions decreased by 50% in patients treated with Rebif compared to placebo. Mapping of lesions showed that Rebif reduced by 50% or more the lesions in specific brain regions associated with clinical manifestations of MS compared to placebo. The decrease in frequency of these lesions by Rebif started at week four of treatment" The link is here if you are interested clinicaltrials.gov/ct2/show/NCT00441103 Sounds quite interesting and promising, I do wonder why your lesions may have spread? Have you been able to talk to your neuro about this and ask questions?

Also Sue, just to add, I don't think you should come off your treatment, but only you can make that decision. I think it's about looking at several things with treatment : Is it working for you? Are you well on it? Can you manage it? Are you getting the support that you need? It may be that it's time for a change in treatment, but definitely one to discuss with your MS / Neuro teams.

Sure, I understand you. The focus isn't soley on lesions and how many you have or don't have, as to be honest many of my lesions could have gone onto be black holes - which is a whole other story!! I was explaining what the treatment has done, but more specifically, it has potentially halted my MS Progression, and that's all anyone with this disease could wish for.

@@lauraironstalksms After 32 years of living with MS i never knew that lesions could disappear. At the very start of being diagnosed my doctor asked me do i have any idea what could be wrong with me, I looked at her and said there is no way i could be pregnant. When you are young you never think you could have an illness.

No unfortunately you don't, you just think you are invincible. But you have to just make the best of a bad situation. Hope you are OK though and managing your MS

@@lauraironstalksms never thought I was but we have no immune disorders so why should I worry. I'm now 37 with five years to live. Ppms 36 symptoms two years prior

Can suggest which medicine for rrms

My doctor suggested dimethyl fumurate

Good to hear that you have no pain, I hope what your Dr recommended works for you 👍

@@lauraironstalksms thanks Laura what about your DMT now days

Hello, not sure if you caught all of the video? But I do explain that I am not on any medication for my MS now and haven't been since May 2010. What would you like to know?