Last reply 2 months ago
DMD

Just wondering if anyone has said no to medication and treated their MS solely with diet?

Is it better to take the opinion of “treat as early as possible” or “wait for more progression and then treat”

Just trying to get as much info on this so I have all questions prepared for when I next meet with my nuero 🙂

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
2 months ago

@katrinaf93 , select the “Diet” Tag that has been automatically added to the bottom of your post above to access previous conversations on this subject.


katrinaf93
2 months ago

Thanks @stumbler 🙂
Had a look through but would be keen to chat to somebody individually who has be bold enough to say no to medication.


dominics
2 months ago

I’m not sure bold is the adjective I’d choose for those that eschew medical evidence in favour of an approach that has no evidential underpinning.

If it worked it’d be called medicine.

Best,

Dominic


smurf69
2 months ago

I saw my neurologist and MS nurse on Friday for the first time after being diagnosed in Dec. I asked the question about the option of not treating in view of my mild lesion load. Her opinion was that people who don’t opt to treat tend to do worse than those who do. That’s why, if it’s approved, I’ve decided to opt for Ocrevus.


dominics
2 months ago

@smurf69 – Ocrevus is approved for use in the UK now. I started it in January.


katrinaf93
2 months ago

@smurf69 I’m in a very similar position to yourself. I was diagnosed in Nov and my neuro describes my lesions as “by no means galloping away.” While my current symptoms are so mild and do not interrupt my normal routine, I’m so fearful medication could bring on additional side effects. Totally unsure if it’s a possibility for me to avoid starting medication until I “need” it or that’s terrible to even be considering.
Appreciate you sharing this with me, keep in touch with how the treatment works for you. Wish you all the best 🙂


smurf69
2 months ago

I just wanted to ask if doing nothing was an option. She said it was but it didn’t seem like she would be recommending it. Tbh I am worried when I see negative posts about Ocrevus but I’m guided by my neurologist saying it’s a better option to treat rather than not. She dissuaded me from lemtrada with the higher risk profile so it was between Ocrevus and tecfidera in the end.


katrinaf93
2 months ago

@smurf69 Doing nothing is definitely still something I wanted to know more about. It probably sound ridiculous but just want to ensure I’ve explored every option before making a decision. Reassuring that you have felt the same.
I guess there’s pros and cons of each and it’s just deciding what is for you. I’m hopeful for you that your choice is the best for you


cameron
2 months ago

There is data about this which you probably need to read to make your decision easier. On the Barts MS blog, there are profiles of long-term MS outcomes of hundreds/thousands? of patients based on a) if and when a drug is started, b) which drug is chosen c) if and when a drug was changed to a higher-efficacy one. Seeing this info as a graph helps you see how your life with MS might pan out. What you also need to consider is how drug risk is managed. Basically, the stronger the meds, the tighter the monitoring and this fact alone should reassure you that you’re not ‘walking into the unknown’. I’m wondering if you have any issues with your neuro team? Whatever your decision, you need to trust them to look after you. After all, they’ve seen every variation/problem with the MS drugs and they know what they’re doing! I remember asking my first neuro just after diagnosis if it was possible to manage MS with diet. He replied sadly that if that was the case he’d be seeing far fewer patients in his clinic! xx


simone2
2 months ago

Hi, I did take DMD for 6 months but had terrible side affects and tryed again with a different drug but was really ill,so I decided to stop after much thought,that was 7years ago, I started following the best bet diet and taking lots of supplement, I saw my Neurospecialist a while ago who was amazed I wasn’t any worse from 7 years ago, for me it seems to work but everyone is so different just do what you feel happy doing.


andysshere
2 months ago

hi this is a hard . the way that i look at it ,is if there is anything that can slow the progrss the I go for it . The only thing that everyone is on the same page are dmd’ . Diet is such a mixed responce from everyone .


mermaidia11
2 months ago

@katrinaf93

I have and I have had MS for 26 years.

I am now secondary progressive and have been for six years.

I live on my own with my two children, and I thank the lord, God and the little donkey that took him to Bethlehem that I swerved the DMDS

Every single other person I know with MS (6) – every single, one just to be clear – has had DMD, and today cannot live independently, or has died .

This is the truth


katrinaf93
2 months ago

@cameron no no, no issues with my team. I don’t actually have a team as of yet. I’m still very early doors on this. I just have such a ‘accept nothing, challenge everything’ type attitude so just wanting to gain information and experiences from different perspectives.
Really appreciate you sharing that info with me, very helpful and I am looking forward to reading the blog you refer to when I get the chance.


katrinaf93
2 months ago

@simone2 this is my biggest fear. I am very well atm and would be terrified to start medication and become unwell. Actually so happy to hear people like you exist and it is a possibility. 🙂


katrinaf93
2 months ago

@andysshere yeah totally understand where you’re coming from, I just have such a fear of medication side effects esp as I am doing so well so just want to get an idea before it comes to the time I have to decide.


katrinaf93
2 months ago

@mermaidia11 oh wow! so glad to hear you’re living independently. that’s mad, thanks for sharing this. really interesting take on this although i imagine you’re in the minority with thinkin you’re lucky to have avoided medication but i knew people like you must exist so thanks for speakin up. also so sorry to hear about your friends.
you’ve definitely given me some food for thought, appreciate you sharing this, thanks!


Anonymous
2 months ago

@katrinaf93 ugh me too im so terrified of making a decision on treatment, i last seen my neuro last month and the decision has been on my mind every day since, every treatment comes with potential side effects and its just so daunting that potentially we could experience any of the possible side effects. Right now i feel as if i don’t need to start treatment, but obviously the neurologist knows best


katrinaf93
2 months ago

@lukezni_1 I’ll not lie, I’m kinda leaning towards staying off medication if that’s an option. Well, maybe even for another year or two, if possible. I kinda feel like my neuro is very much leaving to me and not forceful but obviously providing guidance. It’s so hard. Keep me posted on what you go for.


smack
2 months ago

I have two sisters with MS. Neither is on meds. It is a crapshoot. I take Ocrevus. I need a drug.


dominics
2 months ago

@katrinaf93@cameron has hit the nail on the head regarding the Barts blog. That is where you’ll find authoritative info. Really interesting to hear how the research points to no such thing as inactive MS. Prof G was referring to the idea of smouldering MS. Rather nasty thought, especially after 26y post-diagnosis and having had 4 different DMTs.

All the data is large scale, it must be to form accurate and statistically significant conclusions. People’s one-off stories are no reliable indication. It may be.

Think of it like this: One person wins the lottery each week but that is no better reason to buy a lottery ticket. Your odds remain 14 million to one, regardless of the jackpot winner. They may be your neighbour or there may be two from your street. The odds remain 14million to 1 against, even if everyone on your street wins. 14m:1

Best,

Dominic


birdboy
2 months ago

Completely your choice, but in reality the best option is to throw the kitchen sink at the bloody thing, which includes the best DMTs that modern medicine has to offer. You can’t undo damage that’s already been done.


mermaidia11
2 months ago

&katrinaf93
Ooh the debate rages ! Everyone is entitled to their opinion, right? Lol

…and mine is that it is good to get personal, independent, straight; objective, perspectives as part of your research.

Do as much ( non pharma sponsored – good luck with that one) research as you can and make the best choice for you, and don’t let fear of an imagined future, cloud your judgement.

There is no cure and scant independent human evidence that they solve more problems than they cause.

Statistics are just that; open to manipulation, corruption and incentive. I’ve gathered 17 letters after my name in the last three decades and I’m only 45. This is real life, and we are not numbers, we are vibrant souls with lives to enjoy while we can.

(Barts blog was recently suspended due to a conflict of interest FYI and their Dr God is one of the richest men in the country – (the very richest man being an MS pharmaceutical CEO). Go figure)

It’s how you feel, not how many lesions you have, that matters in my humble opinion.

Life is for living now, and that’s harder to do well on drugs that could compromise that, or even kill you.

Another consideration is the worldwide antibiotic crisis. The are becoming more resistant and less effective. Some not working at all. With no immune system; you really are taking your chances in hoping that antibiotics will prevail every time u pick up an infection.

And It’s not a matter of luck I don’t agree. . But why is it always deemed unlucky when they fail, and we aren’t talking 1/14mill odds either…

In conclusion, you are damned if you do; damned if you dont

There is no definitive answer. There is no cure. It’s all one illness with the same trajectory as far as I know.

So like I advocate; go figure and good luck!


sophieshift
2 months ago

Hey Katrina, I thought you might find this useful: https://msbrainhealth.org/perch/resources/brain-health-time-matters-in-multiple-sclerosis-sep-17-1.pdf

Shift.ms founder George contributed to the report and it certainly makes for an interesting read at least. Good luck with making a decision 🙂


simone2
2 months ago

Hi Katrina, thought you might be interested in a book by Judy Graham ms naturally there is lots of really interesting advice on diets and exercises for ms? It really helped me when I was first diagnosed. Sue


jane_watts
2 months ago

@katrinaf93 hello Katrina,
I’m in agreement with @simone2
I hated the DMTs side effects only had 2. Copaxone my first Avonex 5 years after Copaxone, which I only lasted 3 months using. Have used LDN 4.5 mg no side effects but, like everything in this life it gave up working. Now taking nothing which suits me fine I’m happy as I go through life. Regarding diet listen to your body as I did, it seriously helped.

In the end it has to be your decision what DMD you’re comfortable with if you so choose one.

Either way remember WE are all here for YOU.

Hugs 💜


Anonymous
2 months ago

I don’t know how i would cope without Gabapentin tbh


tonyms47
2 months ago

@katrinaf93 It took me a very long time to get diagnosed, I know if I would have been diagnosed earlier and been put on disease-modifying therapy, I may be still walking around.
It’s a tough decision, but if it were me in your position right now, I would go for the medication before it gets worse.
That’s just my opinion. Whatever you decide I hope it works out for you.


katrinaf93
2 months ago

I hear ya @birdboy

I just think I have this fear of when I start taking medicine, I’m offically sick so still very much in denial. Also congratulations on the PhD! Amazing achievement and glad the MS didn’t get in your way! Hoping it doesn’t for mine 😉


katrinaf93
2 months ago

&simone2 oh wow. Thank you! Exactly what I’m looking for ❤️


natty15
2 months ago

@katrinaf93, hey😊 I was just reading all the comments and all I’ve got to say is just listen to yourself, you know yourself better than anyone and I wish I knew that as I listened to my neurologist and ms nurse and trusted them when personally I think their made my ms worse. I’ve tried 3/4 DMDS and I’ve got worse. Before I was working 40 odd hours a week, walking miles, my mental health was great and now I feel like I’m now fighting a battle to get back to where I was or as close to it. I’m now refusing medical treatments, Not letting myself feel pressured into DMDS and I’m doing exercise, vitamins and eating more sensibly and since I’ve done all that my MS has improved and is still improving. You know it’s bad when your family, friends and boyfriend all beg you not go back on DMDS as they even notice the difference in me. Listen to yourself, get advice from friends ECT and from people on here and you’ll make the right choice for yourself. At the end day its your ms and your life. DMDS might work for some people but ive heard horror stories about DMDS but also good stories. Research research and do more research. Good luck! Natalie❤


katrinaf93
2 months ago

@natty15 lovely to meet you. Thanks for sharing your story with me! <3 very interesting to hear your turn in events. I’m glad to hear you’re finally improving and sorry that was your experience with medication. I think I’m so confused because I manage my MS just fine atm but what if I can’t manage the side effects of medication. I definitely won’t be committing to anything anytime soon. Please keep in touch and let me know how you get on with it! xxx


strictlysoca
2 months ago

We all want to do the best for our MS and making a decision is difficult. I help my MS with meditation, Wahls protocol, yoga, walking in nature, making Carnival costumes and journalling. I have reiki and massages. However I also take the most effective possible drugs that my neurologist will prescribe. I am worried about side effects but I am more worried about brain atrophy.

I am also worried about the impact of preventable disability on my family who will have to care for me, all the studies show that early effective treatments lead to better outcomes. Statistics work by generalising so there will always be exceptions. In the past many people did get disabled and died because that’s what happens in MS even if you take drugs. There is no cure.

I would caution against confirmation bias, we seek to have our views supported and may even believe misinformation. @mermaidia11 is putting forward some about the suspension of the Barts MS blog in support of her views. The blog was suspended for a couple of weeks because of a crisis within the blog team which cause Prof Giovannoni to feel they needed a break.

Wishing everyone all the very best of brain health whatever your choices. It is your body and they are yours to make.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.