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Special diets are they worth it?

As a PPMS 'er are the special diets where I basically remove almost everything I like, are they worth following to the letter?

Has anyone had success with these? Thank you in advance, I’ve tried the gluten free and not had any measurable success.

Thank you

Polly

Xxx

Hello Polly

Im a great believer in taking notice of how your body responds to food…it will usually let you know if it doen’t like something. If you have no known food allergies, then a diet of good quality protein fresh fruit and veg is good enough for most people. Of course, don’t forget the treats.

I personally find if I eat too much brown bread, I get a 3 month looking pregnant wind baby I don’t eat fish or meat anymore either…each to there own

Noreen xx

Hi Polly,

There is a lot of people that swear by these diets. I personally would be miserable on them.

I find a diet low in fat and have plenty of fruit and vegetables works for me. If I eat too much junk food I get really down.

Everybody is different.

Mags xx

Thank you,

Due to being unable to exercise etc, I stick to a low fat, high protein, diet with lots of fruit and veg daily, and I drink quite a bit of skimmed milk, just my preference, a lot of the meds I’m on make me very thirsty and I like the skimmed milk.

My husband likes porrage but my tummy can not take oats and can’t take much wheat at all, it gives me terrible pain, and my bowel just stops working! It’s like the opposite of what these diets say, but like what Noreen says your own body tells you I guess?

Thank you everyone

Polly xxx

Polly I can remember asking my specialist this and he said lifes to short to worry about all these fad diets just eat healthy and watch your weight and enjoy yourself I think it was the only sensible thing he said I detested the man

Still I am not one to hold a grudge I disliked him twenty years ago and I am almost ready to accept him now give me another ten years or so and I could be there. NAHHHHHHH HE WAS HORRID

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Hi Don

Your neuro and mine must have been brothers, cos mine had no bedside manner at all, in fact, I don’t think he had any sort of manner!!

My DX was like this…you have ms, its progressive, there is no cure, go home, forget about it and live your life!! I don’t think I will ever forget the way he told me, even after all these years.

Hope all is is with you.

Pam x

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Pam mine was twenty odd years ago and after not telling me I said stay there and tried running down corridor, fell over and said to him there has to be something wrong. He walked over looked down at me still on the floor and said “my dear young man you have multiple sclerosis” he turned on his heels and walked away leaving the nurses to pick me up physically and mentally. He was a barsteward

Don

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Oh Don, that’s awful, I really do hope that people being DX now have better neuros than we did.

Off into town today, should be nice and quiet now the kiddies are back at school, looking forward to going out, but must reserve energy for the footy tonight. I am the eternal optimist so,…come on England.

Hope today is good for you.

Pam x

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Hi, there was a letter in one of the MS mags recently, Open Door, I think, from a woman who said she was on one of the diets and felt a failure because her mobility didn’t improve at all.

I think there’s no harm in trying but being realistic about the outcome esp with PPMS. They may help in RRMS to reduce relapses (or maybe not) but I don’t have any faith in them helping PPMS.

I try to eat healthy food (hard when fatigue is very bad as I rely on heat-up meals) and try to eat plenty of fruit and veg.

I tried a very low fat diet a year or so ago and my fatigue levels went through the ceiling… so once again, listen to your body.

My dx was like this:

Neuro: I think it’s very unlikely that you have MS but it might be worthwhile doing a lumbar puncture.

Me: I had an LP 2 months ago… I was hoping you’d have the result.

Neuro: (looks at computer screen for about 10 mins) I’m sorry to tell you but you have MS.

Pat xx

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Hi - I have not tried any special diet. I looked at gluten-free but it did not include any of my favourites so did not try it. I felt that I am unable to do a lot of things I enjoy, so did not want to give up these things. I try to eat as much fruit and veg as possible - loads of pears at the moment as my tree is over-burdened.

My dx:

MRI scan - then told friends - one said ‘Oh that is what they do to see if you have MS’. I had never thought of it until that moment. All my symptoms had gone, then went for an LP. I must say the consultant was quiite kind when he told me, and I was at least a little prepared after what my friend had said, but he basically said that there was nothing to be done and just live with it. There was no follow-up appointment and no advice given.

Jackie xx

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I went on a course for newly diagnosed ms patients and the dietician told us that we should eat normal healthy diet including all food groups and just to avoid anything we couldn’t tolerate. Obviously if we were wanting to shed a few pounds to eat less fat and increase veg etc but that was the best way to remain healthy.

My dx was also given with no finesse:

I think you have ms, we’ll do an MRI scan

No, you have a spinal cord injury, we’ll operate.

A year later: You haven’t improved, we’ll send you to a Neuro

No, it’s your cord injury, but we’ll do an LP

You have MS and it’s progressive, there’s no treatment.

Thank God I now have a lovely Neuro who listens, cares and tries to help symptom control at least!

Cath xx

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Oh Cath,

What a time, mine is somewhere in the middle to be honest. Hmm you have PPMS now there’s nothing to treat it, but let’s see what we can do about the symptoms. Okay done lmao.

think we just need to follow the usual healthy eating protocol I think?

Polly xxx

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I’m a great believer in a healthy balanced diet with a little of what you fancy. I haven’t seen any evidence that any particular diet is going to alleviate my symptoms and neither my husband nor I have the inclination to follow anything complicated (he does the cooking so he gets a big say in what I eat!).

My neuro knew from my GP’s referral that I was aware my GP suspected MS. He had written a letter to my GP following my MRI, saying that the results were supportive of a diagnosis of MS; the evoked potential and LP were done to confirm that suspicion. I don’t remember the exact words he used, but it wasn’t a great surprise to be told that the tests confirmed I have MS.The surprise was when he explained the differences between RRMS and PPMS and asked which I thought I have - when I said I thought PPMS he agreed with me.

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