Living with MS at 28 | Life Update | How Am I Coping??

[@mkc0005]

As someone who has been diagnosed for 18 years (actually this week is my anniversary) I am 100% for using a DMT. I've actually been on 8 including 2 drug studies. I fully believe that I am still ambulatory because of the DMTs. Every person is different as well as all drugs are different so they may or may not work - why I've been on 8. But even the ones that had break through lesions and relapses probably slowed the progression down until I found one that has seemed to stop things (Lemtrada and I've gone 3 years without a new or active lesion or a relapse). Even when things appear to be back to normal there can be damage taking place in the background. It's better to be proactive about knocking it down even while you're in remission. I'm also all for diet and homeopathy (my wife is an herbalist) so anything you can add is beneficial. Good luck and happy belated birthday!

[@tomgarbett77]

Thank you so much for the insight. it's really useulf to hear people's opinions that have already been through it all! But yes, I feel it is too much of a risk for me to not accept any treatment at this stage, because early on you need to hit the disease as hard as you can, that seems to be the general consensus now. Interesting that Lemtrada has worked for you because that is the treatment I am keen to go on, because despite the side effects, it seems to be the one that has the best chance of long term remission, which is what I am looking to achieve with my lifestyle changes and treatments. Did you have any major side effects from Lemtrada?

[@mkc0005]

@@tomgarbett77 The only serious side affect (there were minor ones that were dealt with by my infusion clinic) is that it made me more open to shingles which I did get about 1 year after the 2nd dose of Lemtrada. Theres no way to tell if I would have developed this outside of Lemtrada but it is one of the things they say you are open to. Unfortunately it's not a miracle drug in the sense that all of the pre-existing damage is still there with pain being the greatest. However my last MRI did show a decrease in size of one of the older lesions so perhaps it is slowly repairing some things.

[@tomgarbett77]

@@mkc0005 Thanks for the insight that's really useful! But yes, although it doesn't induce healing itself, it is definitely my belief that once the inflammation has been calmed down and your body is no longer on the attack, that it will start to heal and so this is probably what you are experiencing - now that your body isn't going on the attack, it is having a breather and starting to heal. Hopefully one day there will be a definitive treatment for initiating the healing!

[@tomgarbett77]

@@mkc0005 Well definitely sounds like it was a great choice for you! But yes I am a firm believer that when you get all the inflammation and down and manage to stop the immune system being on the offensive, then it will heal itself in time, which is likely what you are now experiencing. And so until we get that miracle drug, I'm going to do whatever I can to calm my immune system down and try to teach it the right way to behave so that it can do the same!

[@eviek2883]

Thank you for those kind supportive words at the end ! Definitely encouraging. I would like to see more of your every day lifestyle , food, gym etc

[@tomgarbett77]

Thanks Evie! That's a great suggestion, I think I will do a full 'Day in the life' video sometime soon that covers everything, because I think that would be useful for you?

[@makda4407]

I feel very similar to you on the diet & medication. I started feeling significantly better when I removed gluten & dairy from my diet, however a lot of the commentary on reddit from people who've had MS for a while say they wish they would've started on a more aggressive drug to prevent new lesions. Feeling very torn because I tested JC+ and that puts me at higher risk for PML (although still low risk) it feels frightening to pursue that when I've seen success with diet and lifestyle alone. I'm a very big believer in a combination of western and traditional medicine but have found the whole treatment discussion to be pretty heavy. Glad to hear you've been doing well & most of your symptoms have improved!

[@tomgarbett77]

Hey Makda, but yes sounds like you are in the exact same boat as me! My brain is telling me to just take the treatment, and like you say do as much as I can early on to really slow the disease down. But the other part of me that is looking into diet and fasting etc wants to teach my immune system to work properly and not attack itself and so by chucking in a tonne of immunosuppressant drugs isn't conducive to that line of thinking in my mind. I think I will go on one, simply because I feel it is probably a risk not worth taking at this stage when I really want to stop the disease in it's tracks. As you're JC+ I'm assuming that means you are looking at going on Ocrevus? I haven't had my results back yet as to whether I am JC+ or not, but I thihnk Ocrevus is likely for me. Although I would prefer to go on Lemtrada because that to me is more in line with long term remission and not just slowing things down. SO CONFUSING!! 😅

[@makda4407]

@@tomgarbett77 Yes, both Ocrevus & Vumerity. I'm leaning in the same direction but have an apt on Monday so we'll see how that goes.. I feel that once I get on treatment most of the anxiety I have will stabilize lol. It's always the uncertainty that's hardest to cope with. Have you engaged with any local or virtual MS communities? I'm also 28 and started looking through some of the large organizations (MS Worlds, NMSS) and found a couple of people through social media. Curious if you've have any recommendations.

[@tomgarbett77]

@@makda4407 Ah right I haven't heard of Vumerity, I will have to look into that. Yes I don't think with Ocrevus there will be any noticeable side effects really, it is more down to the suppression of the immune system from what I have researched. But no, that's not something I have looked into actually. I am part of a couple of Facebook groups one for MS UK and one for the diet that I am on the Best Bet Diet. Both are really useful in different ways, just to keep up to date with things. Interesting thing I have found is that the diet group is overall so much more positive than the general MS group, so I think this is an indicator of how much the diet can help!

[@makda4407]

@@tomgarbett77 That's good to know! Did you watch the Living Proof documentary? It was a hard watch... although it was great to hear about the improvements people had through diet. What were your thoughts?

[@Mem2daunt]

Happy you are doing so well! I start my first round of DMTs in January and am nervous. I’ve changed my diet since my diagnosis a month ago, and continue to work out regularly. So hopefully all of those things together will help.

[@tomgarbett77]

Thank you, appreciate the kind words! What DMT are you going on do you know? But yes I’m certain the diet and keeping active will positively benefit you. Are you going on any particular diet?

[@alrightwithms845]

Great to hear! Thanks for uploading. Well done 🤗

[@tomgarbett77]

Thanks for the kind words!

[@kitty.bradly]

I got diagnosed this year after my second time with optic neuritis (the last time 10 years ago) I'm 34. I have my second Ocrevus infusion in January and I'm wanting to join the aquatic centre and do more swimming with my kids to keep strong and reduce stress relaxing and having fun. So far the worst for me is cog fog, fatigue and feeling like jelly.

[@tomgarbett77]

Thanks for sharing! But yes I would definitely agree you're doing the right thing in looking at ways to exercise and reduce stress! Did you have much MRI activity at time of diagnosis considering there was such a large gap between your two bouts of optic neuritis?

[@kitty.bradly]

I had a lot of lesions, brain and spine, they seemed confused how I hadn't experienced any other effects, looking back I can think of a few things but nothing major. The neuros seem confident there's every chance I might not ever have any major effects on treatment, fingers crossed anyway. I hope this is the case for you as well, you have a great attitude and you're taking care of yourself, that helps a lot I think.

[@tomgarbett77]

@@kitty.bradly yes I think that can only be a good thing that you’ve got a lot of action but without many symptoms so I would definitely say there’s cause for optimism as your neuro has said! But yes I am hoping I am in a similar situation and as long as I continue to hit it hard early on then I can keep the symptoms at bay!

[@atanamorell2]

Thanks for sharing your experiences and glad you are doing well. I was able to live reasonably well for about 20 years with undiagnosed MS through diet & excercise. Last summer (2021) I caught something (maybe COVID or a bad flu) that kick-started a bad relapse which I still haven't recovered from. I was diagnosed with MS last Fall and I've been advised to start Tysabri. I should start infusions next month (Feb). I am nervous about the PML thing, but I don't want to progress any further, so I will do it anyway. I wish you all the best!

[@tomgarbett77]

Thanks for the kind words! That's positive that you think you have had it for 20 years as that would suggest it isn't very active/ aggressive. But yes I think there is a chance I will go on Tysabri so I am in a similar boat. Have you been tested for the JCV virus? I have come back negative which would suggest there is a very low chance of me getting PML but it still seems a risk! But maybe a necessary to take the risk to slow/ stop progression.

[@atanamorell2]

@@tomgarbett77I'm also JC Neg. Over the past 20 yrs I have had a variety of acute issues. With effort, I was able to recover each time. It's getting harder to recover every time it happens. The time before this, I lost my job & my marriage. Without a diagnosis, many people thought I was lazy or crazy rather than exhausted & in pain. I had my first Tysabri infusion last week and everything is good so far. I am now headed to a physical therapy appointment so they can help me swallow better again. I'm looking forward to a better tomorrow. I hope you get the help you need and wish you the best!

[@tomgarbett77]

@@atanamorell2 Yes it definitely sounds like you are staying positive which is great, I'm sure there will be better days ahead! Wishing you all the best too!

[@invoice9997]

Tom, i'm waiting for diagnosis but suspect MS, I'll be following your journey here on youtube, and wish you all the best.

[@tomgarbett77]

Similarly wishing you all the best, and I hope that my journey helps you with yours!

[@goddess.110]

I also find that the best bet diet has helped get my gut issues on order. Alongside adaptogens. I had weakness in my leg and ankle for 6 years before I found the diet. So That weakness may take time to resolve, but I definitely won't ever have gluten, dairy or processed foods no more.

[@tomgarbett77]

Great to hear! But yes the diet will definitely help, and might take a while to help existing issues but it will definitely give you the best chance of being able to heal by keeping inflammation in the body right down! So yes I won’t be touching those foods ever again either!

[@goddess.110]

@@tomgarbett77 keep it up. You give many others hope 🙏

[@tomgarbett77]

@@goddess.110 thanks you! I will definitely keep it up if it is helping people! 🙌🏻

[@jennygibbons1258]

I have statins induced demyelination and multiple spinal issues. Your vids have been a gift at the right time. Thank you 💯 and so happy for your amazing progress and I can't wait to try the protocol myself

[@tomgarbett77]

Thanks Jenny. Haven’t heard of that before but will look into it! I’m sure the positive dietary changes would positively influence it regardless! But so glad that my videos have helped you! 🙌🏻

[@petro3441]

Congrats on the bday🍳☕🥗🥓

[@tomgarbett77]

Thanks Petro! 🙌🏻

[@__Wanderer]

Also had ON severely in one eye - almost blind - now also diagnosed with MS for 3 weeks - was wondering - how long did your ON take to heal? Still slow progress for me sadly :/ good to hear you're doing better now :)

[@tomgarbett77]

When I had it the first time it took around a month before it improved and then it was basically back to normal within two months. So hope yours starts to improve soon! Keep me updated.

[@__Wanderer]

@@tomgarbett77 Hi Tom thanks for your reply :) about 5 weeks now since and it's still very blurry (technically still blind) - I have my fingers crossed it will heal over the next month or two!

[@lillyaswad5028]

Hi Tom, Iv lost sensation in my legs... It's been 2 months and I haven't gotten it back yet. I was wondering how long did it take you for your numbness to go away? Iv been getting really scared that it's not going to go away.

[@11Talltree]

I was diagnosed when I was 28 that was 26 years back. I’m still walking and talking 😀 Best thing is to start BBD Did you have glandular fever or a bad virus ? Amalgam fillings? Holiday vaccinations?🤔

[@tomgarbett77]

Sounds great I am very optimistic I will do the same as I started the BBD straight away when I was diagnosed at 27! I have not had any fillings, but funnily enough I did have a lot of vaccinations for travelling Asia in early 2016... AND had a bad fever of some kind whilst I was in Asia in around May of that year... So I hadn't really thought about that until you just mentioned it but that has really got me thinking as to whether either of those could well have been the trigger. Would be interested to know what your thoughts are?

[@donnamoore8479]

Did they do a MRI on your spine? Just wondering because it is important. I am 65, diagnosed in 2001 but had symptoms many years prior. Do give thought to treatment as early as possible. I was not on any until alot of irreversible damage was done. Attitude is key to living with MS.

[@tomgarbett77]

Hi Donna, but yes they have done multiple MRI’s of the spine too. But thanks for your advice, I’m definitely keen to hit it as hard as I can early on because it seems as though that is key to stopping the irreversible damage you have mentioned. So thank you for that advice and I hope you are doing well!

[@donnamoore8479]

@@tomgarbett77 Actually I am doing well. I haven't been able to walk in 13 or so years, but use a power wheelchair and have a wheelchair van with hand controls for about 11 years. Life is good, have everything I need. Oh yeah, my sister is 69 and has MS as well. I focus on quality of life and am still fairly active, cooking, laundry, ordering groceries, vacuuming, etc. It's not what happens to you, it's how you choose to respond to it. You take care and enjoy your life.

[@tomgarbett77]

@@donnamoore8479 hi Donna, great to hear you are doing well and enjoying life. Completely agree with you it’s what you make of it, not what you are given in life. Keep going and stay happy and positive! 🙌🏻

[@stamureanbianca1689]

Please look fort chronic lyme desise

[@tomgarbett77]

Thanks I will have a look into it! Why are you suggesting they are linked?

[@stamureanbianca1689]

@@tomgarbett77 m.kzbin.info/www/bejne/g5jFXpaBlsySkNU