bensdad 07/12/17
Last reply 6 months ago
Meds or Diet…Help

Hi All, I am new to this. My son ben 21 has just been diagnosed 1/12/2017. We are looking at diet v meds, I have been doing a lot of research and there seems to be a lot of people talking about diet and not taking meds. I realise diet is hard work and a big commitment. We are weary of meds because of side effects and how they seem to lower your immune system. I realise there is a balance, but he would rather try a change of diet vitamin D and a host of other supplements, probiotic, as well as good food. We have arranged a allergy test as well as a vitamin D and vitamin B testing to see if he has enough. I am also looking into leaky gut. I would love to know you thoughts and how long people have been battling this disease and what you have tried? Thanks for your help.

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Anonymous
7 months ago

Hi @bensdad – I’m sure people have taken a more holistic approach to managing their MS. My only suggestion would be to chat with your neurologist, GP & MS nurse before making a decision… the are many different meds that can be taken to slow the progression of MS (disease modifying drugs) there are pro’s & con’s to each type… I’m not really up on the dietry side of things but I’ve heard the Paleo Diet mentioned positively (I can’t vouch either way!!!)

All the best,
Craig


ginette_robles
7 months ago

Hi @bensdad,
First I have to say, God Bless You and thank you for being your son’s advocate…I have MS since 2002, already had a 2 yr old daughter then, I started with Avonex (not good for me) but using REBIF since 2003 until today. Check for diets like the Paleo diet; this one I don’t follow completely but use it as my guide. But I haven’t stop my meds never I don’t believe in stoping treatments! I’m more about what else I can add to my doctors treatments and to try everything. About Vit D, I’m taking 50,000 units gelcap once a week…not covered by my insurance $ but better tolerated than the cheaper options in tablet form… after 15 years with many meds my tummy is too sensitive and gel caps are the best! But VERY important that you didn’t metioned and it’s a must DO! He needs to move!!! Exercise, small weights, stretch bands, Physical Therapy or pool exercises…really anything and everything, mix and match in moderation! Avoid exaustation but exercise and stretch everyday. If he is in a wheelchair please tell him to exercise anyway he can! My story got me at the beginning of my Diagnosis to bed (I couldn’t MOVE not even turn my head) to wheelchair and until I standed up and then with a walker all of this happened in one month period by trying everything at the same time (and then I got pregnant…lol another topic) BUT today, mother of 2 teenagers, I still carry my walker and my 4 point cane with me everywhere and I use them as needed BUT I’m standing and walking and exercising! MS is unique and each one of us is different…and even day by day we can be different. Please Be Patient and Don’t Lose Faith! It’s a Big Fight But WE MSers are very strong!!! Hoping this help you… God Bless🙏🏼Your Family🙏🏼One Day At A Time🙏🏼


ginette_robles
7 months ago

Sorry for the long reply! 😬


annie13
7 months ago

Hi @bensdad,
Your son is extremely lucky to have you in his corner supporting him. I follow the OMS diet and lifestyle programme. I’ve been on it since I was diagnosed in February this year. Yes the diet is hard at first, but it does get easier. I am also on copaxone injections as I just felt it was important to throw everything I possibly could at my MS in order to get it under control. Still early days, so we’ll see…
Other people follow a paleo diet and find this works for them. I think you’re son should just inform himself as much as possible and make his decisions then. Hope this helps!


cameron
7 months ago

I can’t agree that it’s an ‘either drug or diet’ scenario. Back in 2003, when I was diagnosed by Dr (now Professor) Giovannoni, and asked him AT LENGTH about diet, his response was that if diet alone could cure MS he’d have far fewer patients. All forms of MS are progressive – the game is to slow the process right down to the point where the patient achieves NEDA -i.e. ‘No Evidence of Disease Activity’. That isn’t possible for everybody but it seems to be for many, given the multiple treatment options now on the table. But drugs are not the only part of the ‘game’. It’s well-established that MS will probably worsen if the body is also coping with other conditions, the dreaded ‘co-morbidities’. Your son is not of an age where he’ll likely be worrying about cholesterol, blood pressure, obesity etc. but he needs his lifestyle to be as healthy as it can possibly be, now and in the future. For some people, that’s achieved by going vegan, doing ironman challenges, going gluten-free – whatever. We all know the theories! It’s whatever combination of diet, exercise, stress reduction suits him best. Just don’t believe it’s a cure. If you haven’t already done so, I recommend a read of the Barts MS Research blog (authored by Prof. Giovannoni and his research team). More reliable than Facebook and Dr Google. Best wishes.


noelie
7 months ago

Sorry to hear about your son’s diagnosis.

I’m also for the Meds AND Diet, with exercise and stress reduction, for which meditation is very helpful. Basically the OMS program.

One can’t adjust everything in one go, so one small change at the time. Diagnosed 18 months and slowly getting there.

I recommend starting with a few minutes of meditation on waking to start the day as relax as possible, there are some very well made apps, Headspace is my favorite.

All the best


potter
7 months ago

I also agree with meds, diet and exercise. I had two aunts with MS who had it when there wasn’t any treatment and they were both on the Swank diet. They had a terrible time with their MS. The latest greatest thought by a lot of neurologist is to hit it hard with the strongest treatments like Lematrada . One of best things my neuro did for me was send me to physical therapist when I was first diagnosed. I was having terrible leg cramps. She gave me a hours worth of stretches to do that got rid of the leg cramps and to help me keep walking. It has been 10 years and I still do the exercises and I am 65 years old and still walking. Potter


katieelizabeth
7 months ago

Hi,
I have relapsing-remitting MS- only minor sensory issues for me so far, I have recently had LEMTRADA (CAMPATH)
I was diagnosed 4 years ago- and being stubborn would not entertain/wasn’t offered drugs until now. For me the more “hardcore” treatment seemed best out of the ones I was offered being that I am fit and healthy!

I would definetly say exercise – the less I do (activity wise) the more tired I feel – sounds silly but that’s how it seems to go for me!

Diet – well my opinion is if it doesn’t make you happy – don’t do it! I eat well, personally I don’t drink alcohol (but that’s not ms related for me) I don’t currently take any supplements, I just look for food high in vitamin D

I would say see what’s offered speaking to the Nueros and Nurses- get the information, and give your son chance to process having MS – it’s a big thing to be diagnosed and then have to think about drugs, diet, exercise and all the emotions that come with!

Hope that makes sense! 😊


californiadreamin
7 months ago

@bensdad ,

like a few have said above its not an either or choice, but strongly consider both. At 21 he is young and here is the current pathology of MS: Your brain has a remarkable ability to heal itself, but that is a relatively limited amount over the course of someones life. When that reserve is used up, you will enter a progress phase as it can not recover. This reserve works in several ways. One way is that the brain reroutes connections through other pathways, over time there are fewer and fewer options to recover as those pathways are used up. We follow OMS carefully and my wife also uses Tecfidera. Not treating with DMT’s will increase the amount of brain reserve that is used up. There are no drugs today that are able to recover that brain reserve once lost (though it is believed that exercise and other methods help improve it somewhat).

The impact on the immune system on most of the newer drugs is much smaller then other immunosupressant drugs found in other dieases. He is lucky to be diagnosed in a time when this is a treatable (but not curable yet) diease.


nutshell88
7 months ago

I was daignosed 2005 and I’m right now even better than 2005 that symptom is gone.
Never been on diet because im so thin have a bad apetute and never have meds.
Our body needs all type of food as long as its healthy and natural our bodies needs beef bread greens ect sorry for stating the obviouse but my point is all food is healthy for MS. As lond as its moderated not so much not so lil no smoking or apirits our brains aee already in a mess hehe
Hope your don keeps on well and makes you happy and proud.

Kind regards
R


hmcampos
7 months ago

Hi @bensdad, have a look at https://overcomingms.org/, great website with a lot of tips on MS diet. As for the meds I am apologist of taking them, alongside with good diet, sports, Vitamin D and a good strong mental!

Hope it helps.
H


vixen
7 months ago

Hi @bensdad. I am on the side of both and agree with @cameron that the most important thing of all is to slow down progression longer term. But a healthy diet will be of great benefit on a daily basis. When I was diagnosed this year I gave myself a month of thinking time before making any decision and then I discovered that I was ready to go for Meds. Your son is lucky you are here for him. Also, he’s young….who knows what the next 10 or 15 years will be? All these medical discoveries have only come about over the last decade or so, so things are hotting up. Be strong, family!


bensdad
7 months ago

Thank you all for the love and support. It is nice to be part of a group who will tell it, how it is. We are doing a lot of reading, which I’m sure most people do. Ben has changed his diet and introduced a host of vitamins and minerals. Krill oil, Vit C, Vit D, Vit B Complex Magnesium, folic acid, Q10, garlic tablet, amino acids. He is trying to control inflammation by eating an anti inflammatory diet and using Ginger and Turmeric. I know there are other herbs, which help with inflammation, we will sort them out. Still early days! He is still on the fence RE meds but not counting them out, he has a Lumbar puncture next month. Thanks for the comment
@cameron very balanced advice.


ribbons
6 months ago

Hi,

I would go with whatever medication they give you but more importantly diet and exercise. There is a strong, growing body of evidence that a super low saturated fat diet can prevent the progression of MS. This evidence stems from the theory that MS is a metabolic disorder where the body’s inability to break down saturated fats results in a immunological response. The reason it does this remains a mystery.

Neurologists generally do not recommend this, in the same way that 20 years ago they did not recommend taking vitamin D supplements – now this is one of the first things you get told to do upon diagnosis. Back then the substantial body of evidence that exists today was not there to convince them. I personally can’t wait another 20 years of increasing disability for them to one day say: now we believe it’s important to change your diet. By then it will be too late.

Diet is proving to be inextricably linked to so many diseases and conditions that we previously wouldn’t have connected it to. Recently type-II diabetes has been reversed in a number of patients through diet. If you’d asked a doctor 10 years ago if this was possible they would have told you a flat no. What is and isn’t possible changes over time as evidence grows.

I should draw a distinction here and make clear: I don’t think MS can be cured through diet and exercise but I think you can halt it’s progression and this has been demonstrated in a number of cases.

Hope this provides some food for thought (no pun intended).

Cheers

Nick


highflyingbird
6 months ago

this is a very open topic……… personally i have tried all diets over the years and a range of other alternative treatments. i gave everything and every diet a fair shot and a good time frame. personally i think its down to the belief system of the person themselves. how can one diet work for one person with MS and not for another? its the age old question…. if you believe in something strong enough the body will make the relevant changes to accommodate this is just my own findings through years of trying different things. i only started DMD in the last year and personally i feel it is helping me better than any diet or alternative treatment. now people will not like me saying this but it is how it worked for me. you can research everything and come up with your own conclusions but remember alot of things out there are just theories with no science to back it up and throw in a few conspiracies and its believable. im speaking from experience…. you would not believe what things i have tried.
just be aware that there is a big market in illness and a lot of money to be made. dont believe everything u read. I personally think and this is just my opinion that you should do what you feel is right. you will know what works and what dose not but dont waste to much time on something if you are not feeling better from it. move on to the next thing…until like me you find something that helps and works….
the thing about diets is that for every person with an illness that diet works for there is as many that is dose not.. you have to find what works for u. the very best of luck and stay strong…..


mulla
6 months ago

1st think to remember is MS I DIFFRENT FOR EVERYONE, its not a one size fits all, what might work for me might not work for next and so on, its mostly trail and error but one the most important things is EXERCISE, walking,bike anything to keep moving once you sit back its very hard to start again.

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