How I’ve controlled my relapsing remitting MS

Everyday living
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I was diagnosed with “Mild MS” in 2015. At first I didn’t know what MS even was. As someone who never had any on going health issues before, I just lived life carefree. I could eat what I want and not gain weight etc… which is what I believe lead my body to towards something that said no. The symptoms that caused me concern were, the lazy/ aching eye, blurry vision, loss of balance, tension in the left side of head and the tingling my fingertips and toes. Before that, I noticed I was getting tired very easily and put it down to getting a little older, as I was around 32 at this time.

So all these things are happening and after many blood tests I end up being seen by a doctor at Guys hospital who does an MRI and then came the news. Heartbreaking, as we all know. So I’m given the options of medications which help to slow the possible progression and I’m frustrated because nothing says that, either option will take away even these symptoms. Will I have to live with this constant reminder too? The tingling fingers etc? At the same time I had to remind myself that it could be worse.

Over the years a kind of carried on living life as normal one thing I mentioned to the doctor on the day was that years ago in around 2010/11, there was this time I had a Mc chicken sandwich meal from Mc Donald’s and instantly felt dizzy afterwards. Now like I said, I’d never really suffered with any illness before and so this was really strange. The room was spinning and I could barely walk. About 30 mins later I was throwing up for the first time in my life. Long story short, the doctor said it was labyrinthitis. A terrible dizzying effect that lasted about 5 days. Anyway the doctor at guys believes that was my first MS relapse which probably caused the scar on my brain.

This lead me to believe that the food has a great deal to do with the affects of MS so I did a lot of research (baring in mind that this is an inflammatory disease). I cut out Mc Donald’s or anything similar, cut out red meat, cut down on chicken and only had it baked, cut down on fried foods in general and stuck mainly to fish and most things boiled and baked. Fizzy drinks also went out the window. First positive was that I was trimmer and had a little more energy. Many symptoms were still lingering though. Of course I had to be patient, have faith and keep trying though. Easier said than done, I know. So what I did was started watching things on YouTube, on my sleepless worrying nights. Made a file dedicated to MS and one to healthy eating and the benifits of it. Then one night I came across a woman called [removed by moderator], and she’s a doctor who also suffered with MS, ended up in a wheelchair and through having a completely green diet, managed to get herself back up on her feet. Well I thought if vegetables and fruits can do that for her, surely I can get rid of these more minor symptoms. I bought myself a good blender, stocked up and vegetables, like Kale, celery, lettuce, cabbage etc, basically anything green. Bought a whole load of powder supplements, turmeric (great inflammatory), Spirulina, flaxseed, chia seeds, all the berries and I kid you not, my life changed. All my symptoms disappeared. I researched making the body more alkaline and the benefits of that. That was a game changer. Guys, I can’t make any promises to anyone but I know first hand that we need hope in this fight. I’m not saying the medicine won’t do any good but I know from my own experience that the power of nature, has given my MS a fight so good, that I forget I was ever diagnosed with it half the time. So please who whoever’s reading this, give it a go, do the research and get yourself back in the game. I wish you good health and happiness! [removed by moderator]

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Well I’m glad you are doing well and feeling that diet has controlled your ms. However I would think it more likely you are enjoying a remission.

I’m sure almost everyone here has “done the research”.

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i think i know the lady you mentioned who wrote that book.

i’d rather cobble together my own diet rather than spend x number of pounds on someone elses.

it’s a good distraction from the daily grind of living with ms, so you will probably feel the benefit from that.

good luck and let us know how you get on.

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Very interesting, I have been told about changes in diet etc. ( I am not diagnosed). My mother and sister both have MS and changed their diets to an alkaline one and have seen a change. I do believe diet affects MS. By the way I’m under Guy’s and St Thomas’. Lina

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Hi Marty, It sounds like you are doing something very similar to the Overcoming MS plan, Give it a google! It explains why foods do this to us, what to avoid and goes in to so much detail about food, excersise etc etc!

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I read this with interest and can relate, with a similar story and conclusions…first parasthesia type symptoms came on suddenly in 2010 with a shock to the system (I believe triggered by vaccinations for planned upcoming business trip to China), then relapse and diagnosis in 2013, relapse symptoms relatively mild, low frequency but long lasting, ~80% eventual recovery. Upon diagnosis I researched everything possible as I’m sure we all do, and made some immediate changes to my diet; I cut out red meat, fast foods, most saturated fats, dairy and sugar. And started taking daily vitamin D at 5000iu. Spurred on by my condition and her interest, my wife studied a nutrition course and started ensuring our meals were much better balanced and healthier, focusing on plenty of vegetables, fish and chicken, and reducing late evening snacks. I’m skeptical by nature and a scientist/engineer by profession; I design experiments, analyse data and search for cause/effect correlations every working day. So without a “control me”, identical in every way but NOT making the dietary changes, I cannot ever be sure that the diet has had any effect. It’s entirely possible that I’d be the same as I am now if I’d carried on eating steaks and dairy. But with my relapses being mild in terms of symptoms, and essentially few and far between (so far), I absolutely believe that the diet changes have helped considerably. I admit I’m not as strict now as I was, and enjoy the occasional cheese, crisps, and too much wine, but the red meat has stayed out of my diet for 6 years now. When I relapse next, and am reminded of the true potential of this hideous disease, I’ll no doubt force myself to be more strict again. For now, I’m relatively happy and appear to be keeping it under control without meds. And whether real or psychological, the diet improvements work, for me, for now…

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Hello.

im totally with you on all this. I don’t think it’s a coincidence that your experiencing remission, I think diet plays a HUGE part. I follow the overcoming MS programme and I meditate daily and try to exercise as much as I can. I’m pretty much symptom free (touch wood).

keep up the good work!

lisa x

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I used to be in the ‘usual healthy diet’ school of thought. Past couple of years, I have changed my tune, as I have come to feel more and more uncomfortable with the (it seems to me) flimsy science on which much dietary advice (low fat/high carb) over the past 50 years has been based. A look around the crowd on any town centre in the UK will give you a clue how successful that has been in improving public health. So I have been trying a different tack.

For the past couple of years, I have been eating high at/low(ish) carb, and I have been feeling stronger and generally healthier ever since. In a nutshell, I avoid sugar, flour and vegetable seed oils. Just doing that automatically cuts out 90% of all processed crap, most of which is composed largely of those ingredients. The things I do eat lots of are fresh, whole foods: masses of leafy greens of all sorts, nuts, eggs, meat, full-fat dairy and olive oil.

Here is a link to a piece produced the the UK Public Health Collaboration, and I have been following their guidance, pretty much. They aren’t a commercial organisation and aren’t selling anything and have no axe to grind - they are just trying to improve people’s health.

https://phcuk.org/wp-content/uploads/2016/05/Eat-Fat-Cut-The-Carbs-and-Avoid-Snacking-To-Reverse-Obesity-and-Type-2-Diabetes-National-Obesity-Forum-Public-Health-Collaboration.pdf

I am not going to credit my way of eating with how quiet my MS has been recently: having been on Tysabri for about 8 years, I know where the main credit goes for that. But a way of eating that makes me fitter and stronger and physically more resilient must surely give me the best chance of dealing with the MS troubles I already have, and with whatever it has in store for me next. I really do commend the Public Health Collaboration advice to anyone interested in improving their general health.

Alison

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MS is different for each one of us. Some find that diet helps, others perhaps not so much. Consequently, I think what works for you personally, works for you, and that’s absolutely fantastic

What I’d be interested in is the effect of any diet versus the stage of the disease people are at; for example does it arrest/ slow down/improve the symptoms of PPMS/SPMS? I suspect there is no straight answer to this question, so I’d say what ever you are doing diet wise, if it makes you feel good, keep on doing it!

Nia x

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great point Nia which i was going to make.

ALL THESE diets are based on RRMS. well don’t you naturally get remissions, most people i know who have it do. Maybe start it when you are in a relapse and then see if it works.

I am one of those sceptical people I am afraid.

I believe it is down to diet but not some crazy MS diet which when you read one the other one actually contradicts it lol.

I found the OMS book boring and labouring. I have PPMS and trying to get my head around it was impossible. Now if it was done in a comic book i might have stuck with it lol.

HAVING PPMS i dont get a break. BUT I do know for a FACT. if i cut down gluten products like bread etc, it helps stop the burning in my legs and some of the fatigue.

I follow a simple diet called the Mediterranean diet coming from an Italian mother we always ate the rainbow every day.

I do not eat PROCESSED food no i dont. My mother never bought us crisps or snacks not in my childhood. we were brought up on home baking and fruit and veg and all things good in between.

My daughter has M.E. she went Keto and is now working has her own cleaning company and keeps her horse and has loads more energy, she cut out sugar and snacks which she was terrible with.

After the war everyone grew their own veg, got a few chickens. they couldn’t afford to buy the kids snacks or cheap fill in food which was not good for them, and you rarely saw an overweight person. Now in the UK they say we have so many poor people then how come we have such an overweight problem. Its because instead of eating properly families eat rubbish, fill up on snacks and i doubt there are many who sit down on Sunday now and have a traditional roast. every Sunday i make myself a roast dinner it lasts me two days. I buy a chicken from sainsburys or tesco which cost between 2.50 or 3.00 and it leaves me a lot of meat for the week. I buy frozen veg shamefully but i cant do cleaning them, and i love my roast dinner. its so easy to make. (see link below)

I eat really healthy and have stayed same weight for years and my GP is amazed at my bloods.

Oh DARN I still have PPMS though. am I better, well actually yes a slight improvement i have to say on fatigue levels, and i am pushing myself more to walk a bit more every day. BUT BOY if i eat gluten blam it makes me feel awful.

so yes there is a little something in it, but gluten its no secret it irritates the inflammatory process and its a known fact that some people with MS react bad to it.

I did have a blood panel test for sensitivity to foods, and it came up with bad for brewers yeast, soya beans, gluten, wheat, and oddly enough green beans oh yes and bananas.

I wrote this to help people eat better with disabilities.

https://livingdailywithmultiplesclerosis.com/activities-of-daily-living-eating-does-it-really-have-to-be-a-chore-coping-with-a-chronic-illness/

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