How Did I Get MS? | How Do You Get MS?
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- Опубліковано 4 сер 2024
- You, like me, might have been in disbelief when you found out you had MS. I couldn't believe it. Until this point I was a really 'healthy' fitness freak, who everyone would assume and would think was one of the healthiest people around.
Underneath this though I had MS. So I wanted to put this video out there for anyone who is struggling to get their head around their diagnosis, to make you realise that unfortunately it's just a bit of bad luck. But this is not the end, and that all depends on how you take your diagnosis.
I am looking to flip the massive negative of this diagnosis into a positive by turning my life around for the better, because of my Multiple Sclerosis. I also want to strive to do everything I can to keep the disease at bay so that it only serves as a positive driver for my changes and not as a negative dragging me down.
Let me know in the comments below if you have been struggling with your diagnosis as I would love to help out in any way I can and make you realise that there are things you can do with your life and your health to turn this around!
Music used: open.spotify.com/track/6EXChx...
Appreciate you sharing your journey. You have no idea who’s watching and is encouraged by your persistence and vulnerability with this.
Thank you Codey for your kind words! I'm just so glad me sharing my journey and experience is helping others with theirs!
Exactly the same as you. Very good diet, gym 5 times a week for 10 years before diagnosis, healthy lifestyle, etc.
So it was useless for me to apply wahls protocol or other "ms diets" since i have already following most of the advises for years. I decided to go for HSCT in Moscow recently
I would suggest it is always worth trying different things, different diets etc. Have you ever considered carnivore? Seems to have great results for people with autoimmune conditions. I do think HSCT is a good option though, when are you booked in for that?
Really interesting video Tom, positive and instructive. I suffer from osteoarthritis, but changing my diet : no red meat/dairy/coffee/tea, going plant based has made significant improvements in my condition
Thank you for that just found yr video i am a 65 yr old woman with primary progressive ms started in my early 50s try to keep positive and you helped
Great mental strength - I think that is half the battle. Also have the feeling I have to make the most of my mobility while I can and hoping for the best. (while changing diet / getting on a DMT)
Yes definitely the mind is half the battle! But yes definitely keep as active as you can as that will only help.
Tom keep up the videos, very useful content! I tell people I think I may have MS and get the typical stop being an hypochondriac eye rolls. I've been struggling with an underlying illness on and off for years stumping many Doctors. People around me say if it was something serious they'd have found it by now, however all my symptoms pretty much match MS to a tee. I'm also like you into the gym & fitness, however I can say my diet choices haven't been the best over the years (have a big sweet tooth). I have a head and spine MRI scan booked for Thursday, so hopefully some answers next week.
Glad you are enjoying the content! But yes sounds very similar to me, everyone thought I was just overreacting to the point that a lot of people apologised to me when I was diagnosed! But I wasn’t bothered I know it’s just human nature to say ‘oh it’ll be nothing’. But yes I would definitely advise switching up your diet like I have - if you’re anything like me then you’ll be guzzling whey protein shakes, which I know now is terrible for the progression of MS! Wishing you all the best for your MRI, let me know how you get on.
Oh my.. you are me so to speak.. I have neurologist appointment next week.. and hate it when people dismiss your theory of ms or anything really.why can't they be encouraging or at least help by saying something like " well sounds plausible , you know your body better than anyone"... anyway,.. have you any definite yet? Hope you are well
I was also in disbelief, when I found I out I got MS as a healthy 17 year-old, but just like you I've managed to turn these thoughts into postive thoughts, and videos like these are just what I need. Thank you for the video - it means a lot to be able to follow another young person with similar struggles, and see how they deal with them.
Yes it is thought to take when you are that young but it’s good to realise you’re not alone! No problem though, I’m glad the video was useful for you! How long have you had MS for now and how are you coping?
I was hospitalised a few days before my 18th birthday and on my birthday I was told they suspected MS - the investigation took a long time and I finally got the diagnosis around July 2021. So I've had MS for 10 months now. Luckily I haven't been severely affected, it's just been hard mentally, but with the help of my loved ones and thanks to them I've overcome the hardest part.... I hope that makes sense.
@@AbdirahmanMuqtaaar Yes it does make a lot of sense and reminds me of my experience. But you've got to not see it as a terrible thing and try and turn it all into a positive by changing your life for the better! That is what I am trying to do and it has really helped me accept the diagnosis and move on quickly.
How are you now.. brother
Good video, Turn it into a positive, that is exactly how I am looking at it also. What else is there to do. I am sharing positive info also. all the best to you
Yes definitely, if you don't turn it into a positive then it can only ever be a negative! Simple logic but it makes sense.
I'm 55 I got diagnosed a month ago. Still waiting treatment. So difficult what to do. I've had 5 relapses since October, it's very raid I'm trying to cope, a roller coaster. Thank you❤️
Thanks a lot brother for the information. I got diagnosed with MS when I was 23 years old. I got two replases when I was 19 and 20 years old but I didn’t know what it was before. As you said , MS changed me a lot. It will be great if you create a Facebook page or WhatsApp group so we all stay updated and connected.
Hey brother no problems! Glad it sounds like you are doing good! Yes that's a good idea actually I will definitely look to create a Facebook group perhaps where we can really build a community and help one another I think that's a great suggestion!
@@tomgarbett77 thanks a lot brother
Hi Tom- Great video. On Kesimpta on 10 month now! Going well according to my last MRI!! I do have headaches which Alieve takes care of (lasts 12 hours) recommended from neuro. I 've also had some right ear pain. FYI- I did have Mono as a child. Now, it seems there's a link?!
Whatever, the reason, I choose positivity:) I do yoga, daily calm, meditation on Calm app, keep stress low, also cardio. I've gained some weight, but now really trying to cut out sugar and get it off for good. Not easy, but really try:) Best to you- from COLO & have a good holiday season.
Colleen
Sounds great hope kesimpta does the trick for you! And yes there does seem to be a link with mono, but it still doesn’t make much sense because a lot more people have mono than have MS! But yes definitely look into what you can do on the diet side, because from what I have researched, it can have a huge effect! Wishing you all the best and a great holiday season!
Thanx Tom.nice to see again. Happy new year.i truely believe this is going to be the year for us, the pandemic is going to die down and we are just gonna stay healthy and possitive
Hi Petro, Happy New Year to you too! And yes I agree it is going to be a much better year this year! Hopefully we will see some developments too in new treatments for MS that don't just hamper the immune system but help to fix it and remyelinate!
@@tomgarbett77 lets hope for that.although you guys will definitely know about it before us here in south africa
@@petro3441 ah that’s frustrating, is SA a bit slow with getting through new treatments?
@@tomgarbett77 jip.here we are most of the time last to know.or we hear about the new meds and cure for something but have to travel to UK to get it done.thats part of life
@@petro3441 Ah that's frustrating! I have my own frustrations with the Health service here in the UK, but I guess I take things like that for granted that we do usually get new treatments straight away.
Dr. Wahl was a fitness attic. She was not only into marathons, etc, but she was also in to martial arts. She ended up with MS, and it put her in a wheelchair. So, yeah, MS can happen to anyone, no matter what their physical modality. I have suspected that I may have early signs of MS, but I am 52 now. I'm not sure if MS typically afflicts younger people, or if it can manifest in middle age. I woke up one morning in February of 2020 with sudden hearing loss in my right ear. Since then I have had 24/7 "eeeeeeeeee" tinnitus in that ear. As a musician, myself, this was a huge blow to my enjoyment of music. I heard perfectly fine the day before. The audiologist said that a majority of my high frequency was gone in that ear, but the low frequency wasn't too bad. I can still hear in my right ear, but it is half the hearing of my perfect ear. Guess I should just be glad I still have one good ear and I can use that as motivation to get back into producing music. I have felt numbness in my upper legs, but only on the surface of the skin. I have never noticed actual loss of sensory perception of limbs, which it sounds like you experienced. At any rate, if it isn't MS, I think I have some sort of autoimmune disorder that I am trying to get confirmed with my doctors. I have watched your videos on foods that are less destructive to your gut, so I have already started implementing them. I am a vegan, so it's hard to imagine life without beans, because that where I got the majority of my protein from, and now I am worried I may end up with protein deficiency. So, I'm guessing that consuming certain nuts may help. I am a big rice lover, but more white rice instead of brown. Never much cared for brown rice. Rice and beans were my go to. I am going to try and see if I can get a diagnosis of leaky gut, because I think that I at least have that. Whenever I eat anything at all, my belly bulges and 45 minutes to an hour later I get itchy blisters on my back, my lower legs and on my arms. Then I just have to figure out a treatment plan to heal the gut lining which will likely take months.
Hey Charles, thanks for the comment! But yes, it definitely sounds like you've got something autoimmune going on and so it is very important to start to heal the gut like you say! I know that people on the same diet as me that are vegan tend to still have the beans because like you say it is where you get your protein on. So I think what they do is pressure cook the beans, because this helps to remove the lectins which are the destructive part of legumes, so I would definitely suggest that! But yes basmati white rice is my favourite and is actually the best from this diets perspective too so you are all good there. I am an aspiring musician too, so I am so focused on combatting MS so that it doesn't effect my drumming or guitar playing. What instrument do you play?
Hi Tom, as I looked back, I realized that living with MS has made me a better person. The choices I made after diagnosis were to live life one day at a time, make the changes to have a better quality of life such as use of mobility aids, sleeping, and just be happy. Reduced stress was the result of these actions. Take care.
Hi Donna, that’s great to hear! I very much feel the same in that because of my diagnosis I have made decisions that have definitely improved my life for the better. Glad that it has had a similar effect on you!
What an inspirational young man you are. Uplifting advice - thank you. Im currently awaiting my MRI results aged 41. Like you, ive been healthy my entire life, although ive tended to push down emotions. The book by Gabor matte "When the body says No" is fantastic. Emotional respression can be a huge trigger. I live in rural Dorset and have read that the UK is quite behind with its overall MS knowledge/ treatments and you're lucky to find a decent Neurologist. Is this true? Do you have any recommendations. I paid private for my MRI so managed to skip the long wait, but ive no idea about the next step & who to trust. Thank you.
Hey! How were your mri results?
Really good video Tom! Very useful for the newly diagnosed and all those waiting in limbo.
I’ve had MS for 11 years and getting Ocrevus.
Thank you, glad it is useful! Are you only just starting Ocrevus now then? How has yours progressed over the past 11 years?
@@tomgarbett77 I started Ocrevus on march 2021. I didn’t have any DMTs for over six years prior to Ocrevus.
The MS has been fairly stable and I haven’t had any major relapses which is so lucky for me
@@mrms6524 yea that sounds positive that you haven’t had any major relapses! Hopefully the Ocrevus will help to keep it at bay even further 👍🏻
@@tomgarbett77 I may have ‘benign’ MS. Who knows 🤷🏽♂️
@@mrms6524 Hopefully you do! 🙏🏼 do you do anything on the diet or lifestyle side to try to control it or has it just been quiet all by itself?
If I have to have an autoimmune disease, I’d sure rather have MS than ALS!!! Keep doing what you’re doing with your healthy lifestyle and hopefully when you’re my age (68), you too will be able to say it isn’t having that much effect on you!
Thank you. It was definitely a wake up call for me. I am grateful for every day, and to endeavour to turn the so called bad luck to good. 🙏 please research the role of the HPA axis and the adrenals in MS.
Yes that’s definitely the way to think about it! 🙏🏻 yes I have started looking into the HPA axis but I definitely need to read into it in more detail because it definitely plays a large role in my opinion. One of the many cogs of the wheel that we’ve got to try to stop turning!
@@tomgarbett77 your right. And great respect to you for the information you are giving here.
@@goddess.110 ahh thank you! 🙏🏻 so glad what I’m putting out there is helping others!
I also live in Florida so sunlight was never the issue however I was on shift work 7 to 33 to 11 and 11 to 7 so that greatly diminished my sunlight exposure I'm thinking about getting a sunlamp now because taking 5000 International units of vitamin D A-day can lead to kidney stones
May u be completely cured.
I was a bodybuilder and because of multiple sclerosis I lost it all in months…. I was 223lbs at 5% body fat… now I’m roughly 165lbs
Sorry to hear that, but just proves it can affect anyone! Stay strong though I'm sure you have good mental strength and are determined being a bodybuilder and do whatever you can to fight this disease! From what I have seen, I think the fact I took whey protein shakes since my early teens definitely didn't help as dairy seems to be a major component of MS from a dietary standpoint.
I wasent the healthiest person growing up mental health has pleged my life since chikdhood ... but one thing inhave done is try to turn this negative into a pozative ..... as before ms my mental health controlled most my life.... once my ms started getting worse it has forced me to have tk learn how to control it better ... with every relapse it seems I've had to learn a different way of staying in control as it has played a major part I think in my proggresstion of my illness .... but my fam line has the ms gene hard as my mom and both my older sisters also have ms and my mom had an uncle and cusion with ms ..... my older sister was the more work out type and hard worker so when her ms hit first she coudent handle it and went down some hard roads in her forst years cuz she was an athlet really I'm high-school.... gymnastics .... wrestling.... even tried out whe. Amarica tried tk make the foest all women's foot ball leage but ms took most that away now ..... but only way we handle is Turing this negative into a pozative for sure
Do a day in a life pls
👍🏾
🙌🏻🙌🏻 hope you found the video valuable!
You have root canals or mercury fillings?
Were you taking whey based protein powder? My Ms started shortly after I started adding all those dairy proteins to my body
Interesting you say that because I consumed a lot of whey protein throughout my late teens and up until my diagnosis. That was when I looked into diet as a cause of autoimmune conditions and noticed that dairy seems to be strongly linked to MS and so I drew the same conclusion as you that the whey protein definitely wasn't helping. May even have been what tipped it over the edge. So I am so glad I've now cut it out!
Try to blame mine on drugs and being in high school man getting mono
I am not diagnosed, but have had a lot of the symptoms over the years. So going to nerou in a couple months to find out for sure. But in the meantime i have been doing a lot of research. So already changed my diet and started the fasting and exercise . But one thing that sound interesting is HGH. Have you looked into that? It is a steroid you take on a normal bases and has some promising reports with MS.
Best of luck for that neuro appt, but sounds like you are doing the right thing by tackling it head on straight away diet and fasting like I have been! I haven't actually heard of that with regards to MS... I know of HGH from when you used to be really into the gym and growing as much muscle as possible so that is interesting. Also worth noting that fasting will help the body to have a better balance of hormones too which in turn will most likely increase natural HGH as will weight training 💪🏻
When you mentioned MS being more common in developed countries, there are also studies about this being due to too much sanitation in the developed countries, which leads to our bodies being "less accustomed" to viruses and other little bitches that cause infections and inflammation and immune responses
Yes definitely I have heard a lot of research about that too. I think our immune systems evolved to experience dirt, little microbes etc and this is all part of training for the immune system. When you take that all away through extreme sanitisation, the immune system hasn't learnt properly what it should and shouldn't attack which induces autoimmune conditions, or plays a part at least!
@@tomgarbett77 yesh :)
We do not have an “immunity debt” to viruses that is a bunch of hogwash. Exposure to microbes and developing an immunity to them is very different. There’s no such thing as a “good cold” or a “good virus”
I hear epibarr is one predisposition
Yes the evidence looks like Epstein Barr is one of the triggers necessary to get MS. Hopefully one day we will have definitive answers!
What treatment did you end up getting on ?? I’m about to start Kesimpta
I’ve still not gone on one yet! Waiting to hear from my neurologist 😑 Kesimpta wasn’t given to me as an option so let me know how it goes for you!
@@tomgarbett77 okay will do
@@devinnlopez9284 great. What else were you offered?
@@tomgarbett77 I was offered tysabri and rituximab and I didn’t want to keep going to get the infusions and that’s when he offered one I can do at home.
@@devinnlopez9284 Yes that's fair enough, that's definitely something that goes through my mind!
I’m inclined to believe that one of the causes of MS it’s also trauma ,oxidative stress
Yes I would agree with you there!
I do t think anyone know how people even get Ms. There's no research in much some say environment I think thats possible. But not sure not sure how people get it.
There is NO CURE!!
With so many variables in play, it may take a high level AI to possibly figure out why our immune system tries to take us out.🎯
Unless I missed it I didn’t hear you say anything about the Epstein Barr virus. There is a very great correlation with ms. I have two family members with ms. Both had glandular fever before ms onset.
Yes viral triggers are often overlooked and are only just recently being investigated it seems
Yes it does seem the EBV is definitely a trigger that is necessary in order to develop MS. Maybe by the way it affects the immune cells themselves. That along with low Vitamin D levels seem to be two of the key factors.
Two word answer to the question of how you get MS. Sugar and parasites.
You Gen X'ers are kids. Try to interview 60+ yr olds with ms.
60 is tomorrow
Typical boomer that thinks they have had it worse. Try being grateful you made it to 60.
Ms caused from infections and parasites bro.. sadly
That is one theory yes and definitely can play a part in the process! Have you got this from a particular source at all, I’d love to read into it?
My brother died of MS complications.
A recent study indicated there is some relation between MS and Epstein Barr virus.
I am no expert, but I sincerely doubt you are responsible for your MS because you did not take Vitamin D supplements. Millions of people do not take any vitamins. They do not have MS.
Yes I am not saying it's directly because of that. Just that potentially if I had kept my Vitamin D levels higher, then it might have stopped the disease process, because of the effects Vitamin D has on the immune system. Hence why near the equator, MS prevalence is much much lower than further away from the equator 👍